Fibromyalgia Thread

[EDuke98080]

Bright it is so good to see you:banana

I'm so glad things are looking up for you. Please post pic of your new "baby"

Mothers day was nice here. Finally saw some sun:cool1::cool1: :cool1:We still have only had 5 full sunny days in all of 2011 but the few hours this sunday were WONDERFUL!

DH has gotten alot of work so just when we thought he would slow down for the summer he is swamped with private contracts. I miss him being fully present but we have two major house repairs so this is a true blessing. His business seems to be taking off in many unexpected directions so it looks like 2011 will be a big turing point for us....send us pixie dust please;)

He got A's in both his classes and we are looking at the last year of this total crazyness..I'm so proud of him.:lovestruc

I still havent gotten on my feet. This incredabley cold rainy weather has really messed with my emerging pain cycle. Whenever its nice for a few hours I really perk up so I'm hopeful to get a handle on it soon.

Happy Mothers day to all ( a bit late;))

Sending pain free vibes :goodvibesand pixie dust to all

The lack of sun here had really gotten to me too. My doc told me to get a light box for next year so I am going to try it. Can't hurt right? I feel so much better in the sun. Glad things are going well for your DH with work and school. My baby graduates from high school in a few weeks and although I am so proud I am a little bit sad at the same time.

If any of you are interested the New England DISers are putting together a meet on July 2nd that will also be a fundraiser for Give Kids the World. If anyone is close, come on by, it's a friendly bunch! Check out the thread on the Podcast board http://www.disboards.com/showthread.php?t=2710197&page=5

Pain free PD for eveyone!

Erika

[DisneysPixie464]

Hello everyone

I hope everyone is doing okay. It's been crazy here with the last couple of weeks being graduation. But I have officailly graduated and am on my own. I'm looking for a job which has been hard but I believe something will end up working out. Things here have been hard I reached pain level of nine this week and had an accident where my friend pushed a little to hard on the swing and I went all the way up fell off the swing to the ground and look like a bruised banana which definitely did not help with my pain either. I feel like I have been hit by a car and I kinda look like it too.

I think that is really the biggest updates here. How is everyone doing still thinking about all of you, hoping your all doing well with the crazy weather this month.

Sending pixie dust and gentle hugs to everyone.

[tiggspring]

Hello everyone

I hope everyone is doing okay. It's been crazy here with the last couple of weeks being graduation. But I have officailly graduated and am on my own. I'm looking for a job which has been hard but I believe something will end up working out. Things here have been hard I reached pain level of nine this week and had an accident where my friend pushed a little to hard on the swing and I went all the way up fell off the swing to the ground and look like a bruised banana which definitely did not help with my pain either. I feel like I have been hit by a car and I kinda look like it too.

I think that is really the biggest updates here. How is everyone doing still thinking about all of you, hoping your all doing well with the crazy weather this month.

Sending pixie dust and gentle hugs to everyone.

party:CONGRATULATIONS!!!party:


That is such a major accomplishment! Sorry your pain is up becuase of the accident.

[tiggspring]

pixiedust:Well like eveyone else I've been off the board as my Fibro and weather conspire against me. We have now had a total of 6 days of sun in 2011. At least I finally dont have the heaters on:cool1:

The pain has been so high because of the storms that I've been exhasted:headache: so still struggling to get things done. DH is finally home and was to supposed to help but we have been BLESSED with lots of private work:thumbsup2. We really need this to replace our heating sysytem so i'm greatful but he is still putting in 100hrs a week so we are both feeling like we are drowning in fatigue and work/chores.

The days we have sun I feel much better for the amount of time the weather is good. Some days a hour. Others 4 or five. I was hoping to get some long awaited chores done with the energy boost of pain mode. Im afraid its too late becuase the kids will be home 24/7 fighting ,making messes next WED:scared1:

If you noticed my ticker I'm going on the DREAM June 2012:cheer2::cheer2::cheer2:
When I booked we didnt know how we were going to do it but in Feb I learned they were already booking for next summer! I was really bummed 4 weeks later when I had our downpayment that prices went up 25%:scared1:. That is until I was told dates in April were already sold out im my catagory and June wasnt far behind so we were lucky!;) All DH wants is to do something mindless after his final classes. Deck chairs, fruit drinks and kids in programs should fit the bill.:thumbsup2 Kids think we are going to universal (we will for a day or two before the cruise) then NASA which I found I can get free passes from my congressman if I call way in advance. We plan on Passing NASA saying we are going to a further entrance then show up at the DOCK!:yay:

With DH business seeming to take off it wont be the stretch to our budget we thought it would be. Please send pixie dust that this is finally the break we have been working 25yrs for!!! I want so much for DH to be able to switch careers and not work so hard..We are too old for this:rotfl2:

Oh two more things DD12 made my birthday cake this year! It had Epic Mickey symbol on it:lovestruc. Just as I was about to blow out candle my DD6 wispered as question to DH "is mommy now older than dirt?":rotfl: I always tell DH he is older than dirtbecause he is two years older than me. Even though DD is 6 for some reason she took this seriously. DH andswed "no dear their is me then dirt then Mom:rotfl2:"


Sending pain free vibes:goodvibes and pixie dust to all.

[tiggspring]

Just a Bump up to see if anyone is here. How are you all doing?

Weather here is much better and beside the pain, especially late night leg pain, I feel reallly good. Took kids to amusment park down the road a few hours both days this weekend....wow felt really normal except that I have gained so much weight from the year in fatigue hell that the bar on the Ferris wheel almost didnt close:scared1::scared1::scared1: With the good weather and the symptom shift has come some weight loss:dance3: which I'm hoping to eccelerate if I can get more active. Kids seem to be finding a groove to be more civil to each other and helpful to me:worship::worship: So all things are looking up:thumbsup2

I just wish DH was not so exhasted. Really worried that all this work will be too much while anxious as to how we can pay all our repairs if it doesnt keep up. In this economy we just feel blessed and hopeful that our lives are about to change for the better.

Hope all is well with you all.

Sending pain free vibes:goodvibes and pixie dustpixiedust:

[EDuke98080]

Just a Bump up to see if anyone is here. How are you all doing?

Weather here is much better and beside the pain, especially late night leg pain, I feel reallly good. Took kids to amusment park down the road a few hours both days this weekend....wow felt really normal except that I have gained so much weight from the year in fatigue hell that the bar on the Ferris wheel almost didnt close:scared1::scared1::scared1: With the good weather and the symptom shift has come some weight loss:dance3: which I'm hoping to eccelerate if I can get more active. Kids seem to be finding a groove to be more civil to each other and helpful to me:worship::worship: So all things are looking up:thumbsup2

I just wish DH was not so exhasted. Really worried that all this work will be too much while anxious as to how we can pay all our repairs if it doesnt keep up. In this economy we just feel blessed and hopeful that our lives are about to change for the better.

Hope all is well with you all.

Sending pain free vibes:goodvibes and pixie dustpixiedust:


Glad that things are looking up. I understand your worries about your DH. My DS graduated from HS two weekends ago. I was sad as he is my baby but so proud of him at the same time. Last Wednesday terrible tornados tore through our area and missed our home by about a mile. We were so lucky but our area is devestated with so many who lost everything. We have been working at a friends house to help clear all the trees so they can begin to rebuild. Their house along with countless others have been condemed. It is impossible to sit by and not volunteer to help. So sad.

I am hoping for a sunny happy summer for everyone. I know I always feel better in the warmer weather.

Take care!

Erika

[tiggspring]

Glad that things are looking up. I understand your worries about your DH. My DS graduated from HS two weekends ago. I was sad as he is my baby but so proud of him at the same time. Last Wednesday terrible tornados tore through our area and missed our home by about a mile. We were so lucky but our area is devestated with so many who lost everything. We have been working at a friends house to help clear all the trees so they can begin to rebuild. Their house along with countless others have been condemed. It is impossible to sit by and not volunteer to help. So sad.

I am hoping for a sunny happy summer for everyone. I know I always feel better in the warmer weather.

Take care!

Erika




Its so good to see you! Sorry to hear about your neighbors:sad2: for some reason I didnt think you lived that close. My dad lives in Ct but its right on the line so he is close to the tornados in sturbridge area. They seem to be everywhere this year as you know we had one back in April. My thoughts are with you and your friends:grouphug:. It is so hard to pick yourself up after one of these things. Just nocks the wind out of you.

Congrats to your on your DS Graduation:cheer2: Since I am smack dab in the middle of the chaos of school age years I can only imagine how proud and sad you must be right now. My kids are doing well this summer less fights and more helpful:cheer2::cheer2: so I'm not feeling as desprite for the house to be empty like I did last summer when I did not think I would survive Fibro and kids:sad2:

I'm feeling really good :goodvibes best two weeks I've had in a year. Could this be the begining of a partial remission?:rolleyes1 I've never had one for more than 6 months and always around my pregnancies. I'm taking full advantage and trying to play wii fit and take kids for walks in the Mall, amusment park and many local parks in my area. Western Pa has LOTS of parks and they are all free:banana::banana:Lost 7lbs:worship: Now just 43 to get back to last May hoping to lose more since I can move right now.

My Dr wanted me to try lyrica. Said no way. My friend is in the begining diagnosis stage and trying all sort of things and going through hell. She is 28 and her BP is now 190/90 since taking all these meds now she is on BP meds too. She feels right now she needs to so social security will not think she is faking it. Reminds me that most of us get no long term help from these meds and then get the bonus of withdrall when we get off.

Well very chatty I'm afraid.

Sending pain free vibes:goodvibes and Pixie dust to all:wizard:

[tinkerbellandeyor]

Just saying hi I have fibermyalegia and a little over weight and freaking out about it

[tiggspring]

Just saying hi I have fibermyalegia and a little over weight and freaking out about it

Tinkerbellandeyor Welcome!:welcome:

Trust me you are not alone.:grouphug: 16 months ago I lost 40lb for no aparent reason:banana: only to gain 50 back:scared1::scared1: when I crashed after our 2010 WDW trip. I gained 1 lb for every week:eek: I was in what I refer to as fatigue mode which is when my chronic fatigue symptoms are worse than my Fibromyalgia pain. usually these shift last for me about 6month but this last year was agony. Last few weeks I finally am in pain mode and have lost 7 lbs in two weeks:dance3: and feeling better too:yay:

As far as weight I have found in the past when I'm not sleeping I have gained. That was a big factor 2 years ago. I began taking melatonin and lost some more weight on top of the unexpected drop. I can also retain fluid. I really like sassy water which you can find a recipie on this thread. Tastes good (not big water fan) , no calories and is great as a flush. Add cran water (aprox 10 perct cran) and its even better. Atkins and the flat belly diet ( where sassy water came from) are the only things that work for me. You may want to try cinnamon on your food (like oatmeal) or cinnomon pills whenever you eat starches. They say it helps with blood sugar after eating carbs and who has a side effect with cinnomon?

You will find many of us share your issues with weight. I do know a few people that actually have trouble being too thin but thats not most of us.

I see you are getting married soon CONGRATS!

[tiggspring]

Article on Vitamin D and Fibro

http://www.health.com/health/condition-article/0,,20347249_1,00.html


Kids finally letting me on laptop this week so here I am again;)

Bright, michelle, DisneyPixie how you guys doing?

[tinkerbellandeyor]

Thanks for all the tips tiggspring

[carrie6466]

Just wanted to join you guys, if that is okay. They've been trying to diagnose what is wrong with me for three years. I get pains in my back, hips, shoulders, knees, calfs and horrible burning pain in my feet. Also in the area between the thrumb and the forefinger.

I've had 5 different MRI's done sine December. I'm urrently being treated by my family dr., an endochronologist, a neurologist and my gyno (who has somewhow jumped on this bandwagon. In addition to all the other testings, I've had EMG's, bloodwork for things I never heard of and none of it has help. There is nothing showing up anywhere, other than I have 2 pinhed nerves in my lower bck.

Now my GP and the Neuro are in agreement (somewat) that it could be Fibromyalgia and are seding me to yet antoher speialist, a rheumotologist. I want to know if anyone has any experience in what he's going to do. I'm already of 4 mediations and have been tested for everything from diabetes, to RA, to lupus, to you name it, i've neen tested. They even tested for neoplastic syndrome to see if i had some kind of cancer that didn't show up.
Nothing, Nada. Last bloodwoork was 2 weeks ago. GP said he wants me to go for more. I said "why, is it going to help anything?L He knows the answer is no.

I'm very frustrated at this point. I am tired of sleeping all day. I'm tired of headahes. and I'm tired of hurting everytime I try to take a walk for an hour witha friend. Any suggestions greatfull accepted.

[tiggspring]

Just wanted to join you guys, if that is okay. They've been trying to diagnose what is wrong with me for three years. I get pains in my back, hips, shoulders, knees, calfs and horrible burning pain in my feet. Also in the area between the thrumb and the forefinger.

I've had 5 different MRI's done sine December. I'm urrently being treated by my family dr., an endochronologist, a neurologist and my gyno (who has somewhow jumped on this bandwagon. In addition to all the other testings, I've had EMG's, bloodwork for things I never heard of and none of it has help. There is nothing showing up anywhere, other than I have 2 pinhed nerves in my lower bck.

Now my GP and the Neuro are in agreement (somewat) that it could be Fibromyalgia and are seding me to yet antoher speialist, a rheumotologist. I want to know if anyone has any experience in what he's going to do. I'm already of 4 mediations and have been tested for everything from diabetes, to RA, to lupus, to you name it, i've neen tested. They even tested for neoplastic syndrome to see if i had some kind of cancer that didn't show up.
Nothing, Nada. Last bloodwoork was 2 weeks ago. GP said he wants me to go for more. I said "why, is it going to help anything?L He knows the answer is no.

I'm very frustrated at this point. I am tired of sleeping all day. I'm tired of headahes. and I'm tired of hurting everytime I try to take a walk for an hour witha friend. Any suggestions greatfull accepted.

Carrie WELCOME:welcome:


Sorry it took so long to get back to you. I was quite busy fathers day weekend then had a Dr appoinment that resulted in a bit of a crash:sad2::sad2: I feel for you right now the first year or two are crazy as you tried to find out how "your fibro" works. We are all very different.

We were quite active on this thread for about a year but since last Aug or so many of us have been having a very hard time no matter what part of the country we live in. Seems the weather patterns have really taken their toll so you might find our responces slow.

Anywho I have had Fibro/cronic fatigue and complex migraines for 17 years now. I take many supliments and only use vicoden for pain, ativan for chest spasims (feel like heart palpitaions) excedrine for migrains and rarely flexeril for muscle spasims. I say only because I do not use them every day and when I do use them it is less then recomended and for brief periods because my body adjusts to meds after a peroid of weeks.

In the begining I saw 13 drs and was on over 20meds in two years. By the time they were done with me I hadnt left the house more than 5 times in a year, couldnt take showers alone and the headaches and dizzy spells were so bad I crawled to get from room to room when alone:scared1::scared1: I also became dependant to ativan as every time it stopped working we up'd the dose. Withrawl took 6 months:sad2:

Once I stopped with the tests/drs and meds things improved greatly:thumbsup2. Problem is Fibromyalgia is a rule out diagnosis and you dont want to neglect chest pain etc as Fibro unless you rule out heart issues etc:headache:

Here is what I would do if I had to do it over again. First know there is no real treatment for Fibro if you search lyrica cymbalta etc on this thread you will see that some have had relief but it often come at a cost. If you understand this you will not feel obligated to try everything. Think about your symptoms and the risks you are willing to take and go from there. Some meds given by rhumys (humeria I beleive) have a black box warning that they can cause hodgkins disease ( a blood cancer) and lukemia. Fibro will not kill you those diseases can.

Keep a daily journal of symptoms and note what was going on that day, weather, stress what you ate, how you slept etc. The key to fibro is managment. If you know your triggers for certain symptoms you can manage them better. Realize you will be in pain. Trying to eliminate pain usually means two things sleeping all the time or being drugged. trying meditation, visualization, aroma therapy have done much more for me than any drug. If you can afford massage and acupunture I've heard they are quite helpful. Physical therapy can help if you have somone who will not push you to get better. Each day is an adventure..... do too much and you will take many steps back. Learning how to pace yourself is key. Also to avoidnasty side effects always start from a extreamly low dose of a med and work your way up. This advice saved my life with a bata blocker that dropped my blood pressure. Thank god I took half what the Dr ( who did not understand this) told me to take.

There is a facebook page on M. E. international which is a clearing house of studies around the world about myalgic encephalomelitis which is a name these groups would like to classify these diseases fibro/cronic fatigue and M.E as. Here is a site for more info.
http://myalgic-encephalomyelitis.com/

There are links on this thread about the xmrv virus which I have been very hopeful of since lyme disease is very similer and comes from an infection. The studies are being done in NV if you are close you may want to see about a trial.

The best advice is learn how your body works with FMS then adjust your lifestyle as much as you can. Realize that once you learn all you can about the disease you will know more than the Drs. Know what you are/are not willing to do then live your life. Fibro can make us very scared and reclusive. Push through the pain and fear and live as best you can. It will get better once you are more confident in your ability to handle what comes your way.

Know there are many of us here that completely understand. SO come to vent when you are struggling and to brag on good days.

:hug: Hugs from PA:hug:

Sending pain free vibes:goodvibes and pixie dust to all:wizard:

[tiggspring]

roll call:rotfl::rotfl:

Whats everybody up to?

[tinkerbellandeyor]

just dealing with my doctors decision to reduce my fiber meds I was on gabapetion 3xs a day now down 2 1 with new pain meds

[tiggspring]

other was wrong link :(

Here is the group i'm linked to on FB..other page still informative..going through it myself now.

http://www.facebook.com/pages/International-ME-Association/191236810908355

web page
http://www.imeassoc.com/

[tiggspring]

just dealing with my doctors decision to reduce my fiber meds I was on gabapetion 3xs a day now down 2 1 with new pain meds


What is that med? I see you are going on a cruise is it the DREAM? We go in a year:cool1:

[tinkerbellandeyor]

What is that med? I see you are going on a cruise is it the DREAM? We go in a year:cool1:

Medication and yes going on the dream

[tiggspring]

Medication and yes going on the dream

I've never heard of that medication. What is it?



You will have to tell me all about the Dream!!!! I cant wait to go:goodvibes

[carrie6466]

Thanks for the response and the links. :)

[tinkerbellandeyor]

gapapention has been reduced from 3 Xs a day to once a day it is supposed to cut my appetite

[sduck]

I've never heard of that medication. What is it?



You will have to tell me all about the Dream!!!! I cant wait to go:goodvibes

The med she is talking about is Gabapentin, which is the generic for Neurontin.

[TLSnell1981]

Everything, is still about the same, no better..no worse. So, I guess, that is good. :)

iTA
Keep a daily journal of symptoms and note what was going on that day, weather, stress what you ate, how you slept etc. The key to fibro is managment. If you know your triggers for certain symptoms you can manage them better. Realize you will be in pain. Trying to eliminate pain usually means two things sleeping all the time or being drugged. trying meditation, visualization, aroma therapy have done much more for me than any drug. If you can afford massage and acupunture I've heard they are quite helpful. Physical therapy can help if you have somone who will not push you to get better. Each day is an adventure..... do too much and you will take many steps back. Learning how to pace yourself is key
Hey Tigg, just noticed..we are on the same cruise.:cool1:

[tiggspring]

Everything, is still about the same, no better..no worse. So, I guess, that is good. :)

iTA

Hey Tigg, just noticed..we are on the same cruise.:cool1:


Really???? Wow small world. :goodvibesWe will have to meet up for drinks while kids in clubs.

[tiggspring]

The med she is talking about is Gabapentin, which is the generic for Neurontin.


Thanks! that make sence to me.:thumbsup2

[tiggspring]

I was invited to a seminar "psychological and physiological change associated with a brief behavioral intervention in patients with fibomyalgia"

Its about how Cognitive behavioral therapy CBT can help with FMS. CBT is just a fancy way of saying if you change the way you think of a problem you with change how you react and improve how you feel about/deal with it. A good example is AA's fake it til you make it. Fake being sober until one day you are no longer acting but actually a recovering alcholic.

CBt was my prefered way of helping the troubled families I treated beacause it is a very practical goal oriented way to deal with things.

Anyway my reaserching this seminar led me to a web page I used alot when I first got sick Medscape. It has a great reputation and is a clearing house for both patients and Dr's. It takes a little time to get the jargin. But with some patience you will find you understand more than you think and it can help talking to Dr's in their language.

What caught my eye was studies on the HGH human growth hormone (think body builders) and links to migraine. Thought the newbies might like more places to find info.

http://www.medscape.com/resource/fibromyalgia

[TLSnell1981]

Really???? Wow small world. :goodvibesWe will have to meet up for drinks while kids in clubs.

Drinks? Sounds fabulous!!:thumbsup2

Also, just wanted to say, how much I appreciate this thread. The support helps me, get through the tough days. Thanks!:grouphug:

[tiggspring]

Drinks? Sounds fabulous!!:thumbsup2

Also, just wanted to say, how much I appreciate this thread. The support helps me, get through the tough days. Thanks!:grouphug:

I hear they have a drink of the day. Somthing fruity and about $3 off the usual $7 price:goodvibes. I'll be drinking something new every day mmmmm:drinking1:drinking1:rainbow:

Totally agree about thread. Thanks tocherie:goodvibes Great to have a place
to share little victories and major gripes with those who get it:grouphug:

[tiggspring]

New easy to ready article with the latest thinking of what may make us prone to FMS. I have almost all the factors:headache:. So if its not a virus they may be onto something. Scroll down article page for more info if your interested.


http://www.everydayhealth.com/fibromyalgia/are-you-at-risk.aspx?xid=aol_eh-fibro_45-_20110627&aolcat=AJA&ncid=webmail5

[cvance23]

The family and I will be heading to WDW in 20 days and I was diagnosed last august. I am now starting to get a little nervous about the physical toll of walking. I want this to be the perfect vacation since it will be the kids first time. Please any advise will be greatly appreciated.

[tiggspring]

The family and I will be heading to WDW in 20 days and I was diagnosed last august. I am now starting to get a little nervous about the physical toll of walking. I want this to be the perfect vacation since it will be the kids first time. Please any advise will be greatly appreciated.

Cvance:welcome:

First dont panic those of us here have there and made it through:thumbsup2


We all have our own way of managing WDW. Many here find that renting a scooter works for them. Others adjust there meds or keep their schedule light. The first step is knowing your limitaitons and adjusting for them. I had a very detailed plan that worked great for me and may give you some ideas.

Here are a few things off the top of my head.

Hot showers both am and pm to keep your muscles from locking up.

Get a GAC Guest assistance card. It can help cast member place you in a cooler place...find a seat etc while you wait for your ride. I never needed mine becasue of Ridmax but it gives cast members opetions to help you. They can be picked up at guest services. just explain you get tired/ heat intolerant etc and may need assistance. They will recomend scooter...but persist no Dr note neede but I had one.

Managing your fibro has to be the first priority of the family ...over everthing:mad: I know thats hard but consider this. Johny wants one more ride and you know you are cooked. you give in and next am you have crashed...trip ruined. Johny wants one more ride you say we have a big day tomorrow and leave....feeling much better in am....you caring for self first means johny had great trip less one ride...big deal. (easier said then done and why knowing your limits it critical at WDW)

Use Ridmax! this saved us a ton of time and kept kids from fighting because we always went by the list. even when my DD was 4 she understood that she didnt want to wait in line:rotfl:It also made pacing easy on our May trips we aveaged 5min walk 5min wait- ride then repeat:worship: this was perfect for managing pain and fatigue. everone knew there top three things were on the list and garrenteed..rest was gravy;)

Get in EARLY then either go back to hotel if you are close or put a show ie mickeys philharmagic and sitdown lunch with a secound show ie laugh factory...result? 2+hrs resting in ac:thumbsup2. If you think it through you can do this in all the parks.

Consider all sit down meals be lunch or early supprer to beat the heat and fatigue.

In MK use train to your advantage. Divide park into two days if you can then use train to ride to Adventureland/frountier land one day secound day use it to leave Tomorrowland.

Pack in advance. Was mostly packed 3 weeks out. Packing is Exhasting so dont leve it for last minute.

Now I had to do two extream things that worked for me. First I take all my meds prn (as needed) so I can stop taking them without consequence. Since my meds stop working over time I stoped all meds for several weeks :headache: Major pain with benifit for me...my meds worked great on the trip:thumbsup2. Now Not many of us can do that but it is an option. I also put myself on self imposed bedrest for a week almost two. Now I did get meals and watch my kids but NOTHING EXTRA. no lessons, parties etc. My energy was being saved for Disney.:dance3: Here's to Feet up :cool1:

I had one fantastic trip and a second decent trip. Had issues only because my kids had majorly acted up on the trip zapping my energy
:mad:

If you are in a car dont forget the bengay and get a heating pad that plugs in to car:thumbsup2. My kids think bengay is my perfume of choice on trips:rotfl2:

Dont start anything new or load yourself up before your trip. Pace your self in a way that works for you both before and during your trip and you will be fine.

First task make lists of your limitaitons and brain storm how to keep them in check. Then slowly start packing.

YOU WILL HAVE FUN!

[tiggspring]

:rainbow::cake: HAPPY 4TH OF JULY!:cake::rainbow:

[EDuke98080]

Happy 4th to all! Sorry I have been MIA.... Hope you guys are all ok. Will catch up soon.

[KrazyKollector]

Cvance:welcome:

First dont panic those of us here have there and made it through:thumbsup2


We all have our own way of managing WDW. Many here find that renting a scooter works for them. Others adjust there meds or keep their schedule light. The first step is knowing your limitaitons and adjusting for them. I had a very detailed plan that worked great for me and may give you some ideas.

Here are a few things off the top of my head.

Hot showers both am and pm to keep your muscles from locking up.

Get a GAC Guest assistance card. It can help cast member place you in a cooler place...find a seat etc while you wait for your ride. I never needed mine becasue of Ridmax but it gives cast members opetions to help you. They can be picked up at guest services. just explain you get tired/ heat intolerant etc and may need assistance. They will recomend scooter...but persist no Dr note neede but I had one.

Managing your fibro has to be the first priority of the family ...over everthing:mad: I know thats hard but consider this. Johny wants one more ride and you know you are cooked. you give in and next am you have crashed...trip ruined. Johny wants one more ride you say we have a big day tomorrow and leave....feeling much better in am....you caring for self first means johny had great trip less one ride...big deal. (easier said then done and why knowing your limits it critical at WDW)

Use Ridmax! this saved us a ton of time and kept kids from fighting because we always went by the list. even when my DD was 4 she understood that she didnt want to wait in line:rotfl:It also made pacing easy on our May trips we aveaged 5min walk 5min wait- ride then repeat:worship: this was perfect for managing pain and fatigue. everone knew there top three things were on the list and garrenteed..rest was gravy;)

Get in EARLY then either go back to hotel if you are close or put a show ie mickeys philharmagic and sitdown lunch with a secound show ie laugh factory...result? 2+hrs resting in ac:thumbsup2. If you think it through you can do this in all the parks.

Consider all sit down meals be lunch or early supprer to beat the heat and fatigue.

In MK use train to your advantage. Divide park into two days if you can then use train to ride to Adventureland/frountier land one day secound day use it to leave Tomorrowland.

Pack in advance. Was mostly packed 3 weeks out. Packing is Exhasting so dont leve it for last minute.

Now I had to do two extream things that worked for me. First I take all my meds prn (as needed) so I can stop taking them without consequence. Since my meds stop working over time I stoped all meds for several weeks :headache: Major pain with benifit for me...my meds worked great on the trip:thumbsup2. Now Not many of us can do that but it is an option. I also put myself on self imposed bedrest for a week almost two. Now I did get meals and watch my kids but NOTHING EXTRA. no lessons, parties etc. My energy was being saved for Disney.:dance3: Here's to Feet up :cool1:

I had one fantastic trip and a second decent trip. Had issues only because my kids had majorly acted up on the trip zapping my energy
:mad:

If you are in a car dont forget the bengay and get a heating pad that plugs in to car:thumbsup2. My kids think bengay is my perfume of choice on trips:rotfl2:

Dont start anything new or load yourself up before your trip. Pace your self in a way that works for you both before and during your trip and you will be fine.

First task make lists of your limitaitons and brain storm how to keep them in check. Then slowly start packing.

YOU WILL HAVE FUN!

Thank you SO much for this! I was diagnosed with Fibro/CFS and RSD in early 2000, after a nasty bout with shingles.

I too, am so nervous about going to WDW. I want to take my dear granddaughter and I know she'll love it but I worry about how I will do. With me, the main problem besides the overwhelming (at times) fatigue, is the neuropathy in my legs. Some days it's not so bad but other days it's just almost more than I can bear. My legs will be/or feel icy cold on the outside, even if it's 80 degrees out but the inside of my legs feel like the bones are being used as logs on the fire.

I was on Neurontin for many years but the side effects just got to me so when the doc went to put me on Lyrica, I decided to see if I felt worse/better or the same without it. I felt the same, so skipped the Lyrica. Would like to try Cymbalta, see what that does for the pain.

I also worry about the "crash". I can be okay for a few days and then, "wham"--I am out of the game. I've learned to flow with the adrenaline spikes and use them, since I am going to crash no matter what. It's just no predicting when the crash will happen. Or when my legs will just give out.

VERY nervous.......:scared:

[tiggspring]

Thank you SO much for this! I was diagnosed with Fibro/CFS and RSD in early 2000, after a nasty bout with shingles.

I too, am so nervous about going to WDW. I want to take my dear granddaughter and I know she'll love it but I worry about how I will do. With me, the main problem besides the overwhelming (at times) fatigue, is the neuropathy in my legs. Some days it's not so bad but other days it's just almost more than I can bear. My legs will be/or feel icy cold on the outside, even if it's 80 degrees out but the inside of my legs feel like the bones are being used as logs on the fire.

I was on Neurontin for many years but the side effects just got to me so when the doc went to put me on Lyrica, I decided to see if I felt worse/better or the same without it. I felt the same, so skipped the Lyrica. Would like to try Cymbalta, see what that does for the pain.

I also worry about the "crash". I can be okay for a few days and then, "wham"--I am out of the game. I've learned to flow with the adrenaline spikes and use them, since I am going to crash no matter what. It's just no predicting when the crash will happen. Or when my legs will just give out.

VERY nervous.......:scared:

I get adrenaline spikes too! sometimes from just talking to a friend on the phone :rotfl2: I usually try to clean as fast as I can ;)

Let me know if I can help with anything else. I planned my first trip for 2 yrs or so and it went really well:lovestruc. coming home though was a bear:headache:

[tiggspring]

Happy 4th to all! Sorry I have been MIA.... Hope you guys are all ok. Will catch up soon.

Good to see you around! I'm stable:cool1: and losing weigh:dance3: Down 12lbs son only 38 to get to last years wdw weight.:eek:

We go to Ocean City next week so I wont be around. Kids know we are going somewhere but dont know its the beach. We havent been to a beach in 5yrs. So they are just so begging to go.


Sending Pain free vibes :goodvibes and pixie dust to all :wizard:

[carrie6466]

Thank you SO much for this! I was diagnosed with Fibro/CFS and RSD in early 2000, after a nasty bout with shingles.

I too, am so nervous about going to WDW. I want to take my dear granddaughter and I know she'll love it but I worry about how I will do. With me, the main problem besides the overwhelming (at times) fatigue, is the neuropathy in my legs. Some days it's not so bad but other days it's just almost more than I can bear. My legs will be/or feel icy cold on the outside, even if it's 80 degrees out but the inside of my legs feel like the bones are being used as logs on the fire.

I was on Neurontin for many years but the side effects just got to me so when the doc went to put me on Lyrica, I decided to see if I felt worse/better or the same without it. I felt the same, so skipped the Lyrica. Would like to try Cymbalta, see what that does for the pain.

I also worry about the "crash". I can be okay for a few days and then, "wham"--I am out of the game. I've learned to flow with the adrenaline spikes and use them, since I am going to crash no matter what. It's just no predicting when the crash will happen. Or when my legs will just give out.

VERY nervous.......:scared:

I'm really new to this thread, too. I just wanted to say I get the exact same thing in my legs and my feet! I'm on Neurontin for it, too. So far, no side effects thank goodness. I've been on it since about April. I'm on a few other meds for other problems and they are playing nice together right now. I'm going to see a new doctor (rheumatologist) for the first time the day after I return from my WDW trip.

I'm really nervous about my trip, too. I've gone back and forth a million times on whether or not to get an ECV. I'm bringing phone numbers in case I decide while we are there that I need one.

[TLSnell1981]

Pain free vibes!!:goodvibes

[pag1164]

Hi everyone,

I'm new to this list and wanted to say hello.
My doctor never told me when I was diagnosed. I was at an appointment and she asked, "So, how's your fibromyalgia doing?" I looked and her and said, "My what?" She then explained to me what it was and that I had had it for years. Gee, it would have been nice if someone had told me about it.

My family is planning our first vacation ever to WDW followed by a cruise. We plan on one day in Epcot, then a 7 day cruise. My DD had cerebral palsy and uses a wheelchair and is completely dependent, but mentally fine. I am so worried that I won't be able to walk around the park and the ship without heavy doses of pain meds. I'm so glad I found this list. I look forward to learning a lot.

[tinkerbellandeyor]

Hi everyone,

I'm new to this list and wanted to say hello.
My doctor never told me when I was diagnosed. I was at an appointment and she asked, "So, how's your fibromyalgia doing?" I looked and her and said, "My what?" She then explained to me what it was and that I had had it for years. Gee, it would have been nice if someone had told me about it.

My family is planning our first vacation ever to WDW followed by a cruise. We plan on one day in Epcot, then a 7 day cruise. My DD had cerebral palsy and uses a wheelchair and is completely dependent, but mentally fine. I am so worried that I won't be able to walk around the park and the ship without heavy doses of pain meds. I'm so glad I found this list. I look forward to learning a lot.

:welcome:

[DisneysPixie464]

Oh my goodness I am so sorry I have been MIA for so long. I have thought of all of you often and hope things are getting better or you all.

WELCOME to all the newcomers to this thread it has helped me out so much throughout this past year and these ladies are wonderful :D

Things with me have been stressful and tiring I am still looking for a job and finding a good balance with everything I was doing well for a good period of time and was able to get so much done which made me very happy. These past two weeks have been hard with what seems to be a never-ending thunderstorm and have had a quarter of the energy I used to just two weeks ago. But this is summer and I'm hopeful things will get better soon :)

How is everyone doing? It's so exciting that quite a few of you are going to go on the Dream you will have to share all of the fun things and how you did on the ship. I'm so excited to go as soon as I can :)

Hope everyone is doing great this summer sending pixie dust and gentle hugs to everyone and another welcome to all the newcomers

[tiggspring]

Hi everyone,

I'm new to this list and wanted to say hello.
My doctor never told me when I was diagnosed. I was at an appointment and she asked, "So, how's your fibromyalgia doing?" I looked and her and said, "My what?" She then explained to me what it was and that I had had it for years. Gee, it would have been nice if someone had told me about it.

My family is planning our first vacation ever to WDW followed by a cruise. We plan on one day in Epcot, then a 7 day cruise. My DD had cerebral palsy and uses a wheelchair and is completely dependent, but mentally fine. I am so worried that I won't be able to walk around the park and the ship without heavy doses of pain meds. I'm so glad I found this list. I look forward to learning a lot.

Welcome!!

Have you tried aroma therapy oils? My friend became an aroma therapist and custom makes blends. It was really surprising how mixing/matchng oil imediately changed how I felt. It took about an hour of sniffing to get it just right. Quite a nose work out:rotfl2: Not a cure all but can take the edge off. :)

If you havent tried relaxation and meditation techniques this can help too. Sound mediations cds are much easier to work with. Find a sound you love like rain or whale sounds etc and focus on your breath or imagine your in a perfect space. Taking your brain away from the pain can help.

At WDW I took me time each am and pm for a shower. So important with the pain symptioms.

For me the joy of being at WDW was a great pain reliever:thumbsup2. Comming home was a bear:headache:.

Sending pixie dust your way :wizard:

[tiggspring]

Well I'm down 15lb:cool1: and gettg lots done. Pain still issue but at least have energy to move:dance3:


Off to Ocean city for our chepo vaca. Gotta save up for that cruise! By not staying on fri/sat Francis Scott Key resort gave me a night free! Free movies on the beach and lots of exploring of the Island with wild ponys. Now if I can get my kids to all eat half what they normaly do I might acturaly save a ton :rotfl:. For us food is half the fun so I guess I'll have to suck it up and pay some big bucks for seafood.

Sending Pain free vibes:goodvibes and pixie dust to all:wizard:

[tiggspring]

Oh my goodness I am so sorry I have been MIA for so long. I have thought of all of you often and hope things are getting better or you all.

WELCOME to all the newcomers to this thread it has helped me out so much throughout this past year and these ladies are wonderful :D

Things with me have been stressful and tiring I am still looking for a job and finding a good balance with everything I was doing well for a good period of time and was able to get so much done which made me very happy. These past two weeks have been hard with what seems to be a never-ending thunderstorm and have had a quarter of the energy I used to just two weeks ago. But this is summer and I'm hopeful things will get better soon :)

How is everyone doing? It's so exciting that quite a few of you are going to go on the Dream you will have to share all of the fun things and how you did on the ship. I'm so excited to go as soon as I can :)

Hope everyone is doing great this summer sending pixie dust and gentle hugs to everyone and another welcome to all the newcomers

Tip.

If you think you want to go on the Dream book early!! I was looking in Feb 11 for June 2012. I had been told they were already selling quick:scared1:. We had to wait six weeks to get up our down payment and the cost went up 20pect:scared1::scared1:. Even worse my TA told me that she was glad I made my down payment when I did as april dates were already selling out and June wasnt far behind especially for my 5 person cabin. It sounds crazy but start thinking about it no later than 16 months out and be prepared for the $200pp downpayment.

[carrie6466]

Can I just say, in my neverending medical saga/source of frustration and stress, that I had to go for a CT scan yesterday for a 'stone hunt' looking for kidney/bladder stones? They didn't find any, but did have (yet again) other findings and now the doctor is saying I have IBS as well as every other thing ::groans::. They want me to go for a colostomy. And I woke up to my knee swollen like a balloon and both knees and thighs hurting so bad I could barely walk for about 2 hrs after I got up.

I'm starting to debate the wisdom of taking this trip! I haven't gotten an ECV or wheelchair, figuring we're doing a lot of breaks, but now I'm just not sure how this will work out with my knees starting to act up on me 4 days before I leave. ARGH! I'm icing them and taking it easy for the next few days. All I am going to do is finish packing, which I have been doing in increments. I just needed some place to say all of this, because I really think everyone in my life is sick of hearing it all. I'm starting to feel like a hypochondriac, except I know that what I am feeling is real:headache:

Thanks for listening!

[tiggspring]

Can I just say, in my neverending medical saga/source of frustration and stress, that I had to go for a CT scan yesterday for a 'stone hunt' looking for kidney/bladder stones? They didn't find any, but did have (yet again) other findings and now the doctor is saying I have IBS as well as every other thing ::groans::. They want me to go for a colostomy. And I woke up to my knee swollen like a balloon and both knees and thighs hurting so bad I could barely walk for about 2 hrs after I got up.

I'm starting to debate the wisdom of taking this trip! I haven't gotten an ECV or wheelchair, figuring we're doing a lot of breaks, but now I'm just not sure how this will work out with my knees starting to act up on me 4 days before I leave. ARGH! I'm icing them and taking it easy for the next few days. All I am going to do is finish packing, which I have been doing in increments. I just needed some place to say all of this, because I really think everyone in my life is sick of hearing it all. I'm starting to feel like a hypochondriac, except I know that what I am feeling is real:headache:

Thanks for listening!


Hang in there you can do it!

Sending pixie dust :wizard: and hugs your way:hug:

[SeaSpray]

Can I just say, in my neverending medical saga/source of frustration and stress, that I had to go for a CT scan yesterday for a 'stone hunt' looking for kidney/bladder stones? They didn't find any, but did have (yet again) other findings and now the doctor is saying I have IBS as well as every other thing ::groans::. They want me to go for a colostomy.

Do you mean a colonoscopy? I have IBS and the only real way that they can rule out other reasons for the symptoms is to do a colonoscopy. The procedure itself is not bad at all, you'll be heavily sedated. But the day before, the prep is not fun. Having IBS the running to the bathroom wasn't the worst part for me, but drinking the disgusting stuff, was. :crazy2:

And I woke up to my knee swollen like a balloon and both knees and thighs hurting so bad I could barely walk for about 2 hrs after I got up.

I'm starting to debate the wisdom of taking this trip! I haven't gotten an ECV or wheelchair, figuring we're doing a lot of breaks, but now I'm just not sure how this will work out with my knees starting to act up on me 4 days before I leave. ARGH! I'm icing them and taking it easy for the next few days. All I am going to do is finish packing, which I have been doing in increments. I just needed some place to say all of this, because I really think everyone in my life is sick of hearing it all. I'm starting to feel like a hypochondriac, except I know that what I am feeling is real:headache:

Thanks for listening!

I know that you're already on this trip and I hope that you're feeling ok! I've had to rent an ECV for the last few years.... It's the only way that I can get around the parks, due to fibromyalgia plus bad plantar fasciitis. I hope that you rent one if you need one. :hug:

I know how you feel when you say that you need a place to say all of this because you hate to sound like a hypochondriac all of the time. I feel the same way, so most people have no idea how much pain I'm in all the time. My poor family. LOL I don't know if there's been two days in a row in the last few years where I didn't say, at least once, "ugh, I don't feel good". The funny thing is, in my mind, I try hard to NOT say it, so imagine if I said it as often as I wanted to. LOL

Anyway.... I'm feeling really lousy lately. I'm too young to feel this horrible all of the time. I'm on Lyrica for fibromyalgia. When people ask me if it helps, I tell them that I have no idea because I don't know if I'd feel worse if I didn't take it. :confused3

I also have TMJ/jaw pain, constantly. The masseter muscle gets tight from clenching in my sleep. So you know what the recommended solutions are? muscle relaxers, Advil, prescription pain medication. That's all well and good, but the muscle relaxers and prescription pain medication just makes me feel even more "out of it" than I already do. :headache: And too much Advil upsets my stomach even more than it already is.

I've gained about 20 pounds in the last 8 months or so. I don't know why. My eating habits haven't changed, and my activity level hasn't changed. Maybe it's because I just turned 50 and my body chemisty has changed. Who knows. :guilty:

Anyway, I just needed to vent. Thanks to anyone who's reading this. :surfweb:

P.S. My DH and DSs are pretty good about all of this. DH is not the demanding type regarding dinners or anything (all day I kept talking about what I planned to make for dinner; however, I just threw frozen pizza into the oven because of how crummy I feel right now), and DSs are good about doing their share of household chores. I don't have DSs do everything because if I did, then I think that would just depress me. I do work 35 hours a week, at a desk job, fortunately. :surfweb:

I just hate to even talk about how bad I feel all of the time, to them, so I try to keep to maybe a couple of times a day. :rolleyes1 lol

[carrie6466]

Do you mean a colonoscopy? I have IBS and the only real way that they can rule out other reasons for the symptoms is to do a colonoscopy. The procedure itself is not bad at all, you'll be heavily sedated. But the day before, the prep is not fun. Having IBS the running to the bathroom wasn't the worst part for me, but drinking the disgusting stuff, was. :crazy2:


I know that you're already on this trip and I hope that you're feeling ok! I've had to rent an ECV for the last few years.... It's the only way that I can get around the parks, due to fibromyalgia plus bad plantar fasciitis. I hope that you rent one if you need one. :hug:

I know how you feel when you say that you need a place to say all of this because you hate to sound like a hypochondriac all of the time. I feel the same way, so most people have no idea how much pain I'm in all the time. My poor family. LOL I don't know if there's been two days in a row in the last few years where I didn't say, at least once, "ugh, I don't feel good". The funny thing is, in my mind, I try hard to NOT say it, so imagine if I said it as often as I wanted to. LOL

Anyway.... I'm feeling really lousy lately. I'm too young to feel this horrible all of the time. I'm on Lyrica for fibromyalgia. When people ask me if it helps, I tell them that I have no idea because I don't know if I'd feel worse if I didn't take it. :confused3

I also have TMJ/jaw pain, constantly. The masseter muscle gets tight from clenching in my sleep. So you know what the recommended solutions are? muscle relaxers, Advil, prescription pain medication. That's all well and good, but the muscle relaxers and prescription pain medication just makes me feel even more "out of it" than I already do. :headache: And too much Advil upsets my stomach even more than it already is.

I've gained about 20 pounds in the last 8 months or so. I don't know why. My eating habits haven't changed, and my activity level hasn't changed. Maybe it's because I just turned 50 and my body chemisty has changed. Who knows. :guilty:

Anyway, I just needed to vent. Thanks to anyone who's reading this. :surfweb:

P.S. My DH and DSs are pretty good about all of this. DH is not the demanding type regarding dinners or anything (all day I kept talking about what I planned to make for dinner; however, I just threw frozen pizza into the oven because of how crummy I feel right now), and DSs are good about doing their share of household chores. I don't have DSs do everything because if I did, then I think that would just depress me. I do work 35 hours a week, at a desk job, fortunately. :surfweb:

I just hate to even talk about how bad I feel all of the time, to them, so I try to keep to maybe a couple of times a day. :rolleyes1 lol

I do mean a colonoscopy. I'm just losing my mind lately, that's all :) Yeah, I know about the drinks, I've taken my MIL for hers and been there the night she had to drink the stuff. UGH.

Trip was good, but I did end up with an ECV. I just couldn't do it. My knee swelled up to twice the size of the other one, too. I had an appt with a rheumotoligist the day after I returned. He took one look at it and sent me for x-rays and bloodwork. I will get the results on Monday, hopefully. I asked him if he could give me something for the pain. He told me to take Aleve. Yeah, because I wasn't already taking it for a week for the swelling.

I made it through 2 days ok, but the 3rd day I was a mess. I could barely limp my way around and ended up renting on the 4th day. That day I rented an ECV upon entering the park and the day after that (since I was staying at BW) I went down and rented for the rest of the trip from Buena Vista.

Lesson learned. I should have just rented before I left. I knew I was going to end up needing it and was trying not to, trying to pretend everything is still 'normal'. UGH. :)

Despite all of that, enjoyed myself. Love watching DD have fun :)

[lady_bug_888]

Hi everyone!

New to this thread and happy I've found it! My therapist (CBT works wonders for me) keeps telling me I should chat with others about FMS so I'm happy I found this thread on the DIS! :) I've had FMS since 1993 (I was 13) but I wasn't 'officially' diagnosed until 1999.

I suffer from a variety of symptoms and I'm constantly learning more about the condition and I think it's so funny how things click and I realize that yes, this is just another part of FMS. Some of the things that plague me are: extreme fatigue (very debilitating and energy draining), insomnia, which doesn't help my fatigue or pain!, pain pretty much everywhere...I can tell when the weather is changing or the air pressure changes, depression/anxiety (CBT helps here!), and noise sensitivity which is quite hard for me to deal with sometimes.

In addition to FMS I also have chronic asthma and severe allergies so sometimes I feel like I'm fighting an uphill battle! For the most part, I try to stay positive about life and my illnesses and try not to let anything get in the way of achieving my goals.

I've been on so many drugs for FMS that I can't remember them all! Amitriptiline (sp?) was one of the drugs and I was on that for several years but I hated the side effects and you are supposed to avoid direct sunlight. I love the sun and it brightens my mood so I haven't been on that medication for quite a few years. I was on Nerontin (sp?) for a few years as well which was great for the pain but I didn't like being on a drug that altered my brain chemistry that much. At one point I was on Nerontin for pain, a drug to stay awake and give me energy during the day, and something to put me to sleep at night. That is when I put a stop to everything and went to eating healthier, getting massages and seeing a therapist. I have also added more exercise, long baths/soaks in a hot tub, and taking advil as needed to my list. Due to EXTREME fatigue and insomnia I have had to add taking a sleeping pill back to my list for the past 2 1/2 years. I just can't sleep without it (though sometimes I can get a brief nap in the afternoon).

Living with this disease SUCKS! I'm 31 years old, yet most days I feel like I'm 100. I'm so tired and sore and stressed out and it's hard on my family when I'm grouchy because I'm so tired of dealing with everything. I DO try to stay positive and identify what is causing me to feel yucky and I tell my DS, DH and DD when I'm feeling especially crumby so that they know if I yell or snap it's not them...it's just something I can't control at the moment.

Currently I'm preparing for our first trip to WDW in 13 days!!! I just got home from 8 days at the cabin and DS is going to spend some time with his grandparents starting tomorrow so I'm trying to pack for him. I'm the packer, cleaner, planner and organizer in our household so while all this is exciting (and I'm so HAPPY to get to go to WDW) it is also overwhelming and stressful. My family doesn't really understand why I'm so grouchy all of a sudden but there is just so much to do before we go!

Anyways, I look forward to hearing from everyone and I hope I can provide some support when needed!

[TLSnell1981]

Well I'm down 15lb:cool1: and gettg lots done. Pain still issue but at least have energy to move:dance3:
Sending Pain free vibes:goodvibes and pixie dust to all:wizard:
:cool1::cool1:
I'm just losing my mind lately, that's all :) :)

Nah..it's just the fibro.

[SeaSpray]

Good morning everyone, from my little cozy office at work! :surfweb:

Does anyone else spend the majority of their weekends sleeping and/or lounging with a heating pad?? I do... :guilty: DH and I spend most of our weekends in the family room; me, either sleeping or just resting, watching tv, on my laptop, while he's there working on some programming that he's writing, on his laptop. At least we're together, in the same room. lol I just feel like it's fairly pathetic, but then again, what else can I do?? The last couple of times that I got out and walked for 4-5 days in a row trying to get some exercise, I was rewarded with severe lower back and hip pain for a few weeks. :headache: Then a month or so ago I was feeling good on my drive home from work so I called home and had DS bring the lawn tractor out of the shed because it was such a nice day and I felt like mowing the lawn - I was then rewarded with a bad allergic/asthmatic reaction and sick for a few weeks. :headache: :headache: I just feel like life is "out there", while I'm "in here",whether I'm at home or at work. :surfweb:

The thing is, I try to keep this all in perspective, I feel like things could always be worse, so I'm appreciative that it's not worse. lol





Carrie: I'm glad that you had such a great trip! I'm glad that you decided to get the ECV afterall. It's not fun to admit that we need wheelchairs to get around WDW, but sometimes that's just the reality of it.

lady bug: Welcome :) I agree, this disease does suck. The best we can do is to deal with each "thing" (pain, muscle weakness, fatigue, etc) as it comes. I've tried some of the same medications that you have, and I'm currently on Lyrica. I guess it helps, I don't know. But at least I don't really have any negative side effects, so whatever help it may be giving me, I'll take it.

I try hard to not take more medication than I need. Some days I take nothing at all, except for my prescriptions (Lyrica, blood pressure med). But some days the pain is really bad and I start out trying Advil (which does help a lot sometimes!) and if it's night time and the pains are real bad and I know that I won't be able to fall asleep, I take a muscle relaxer (a lot of pain is my jaw, the masseter muscle tightens up). I try not to take Vicodin too often because I don't think it does a great job relieving my pain, and I'm aware of it's addictive properties. I also take 5mg of Ambien most nights at bedtime.

[tiggspring]

Hi everyone!

New to this thread and happy I've found it! My therapist (CBT works wonders for me) keeps telling me I should chat with others about FMS so I'm happy I found this thread on the DIS! :) I've had FMS since 1993 (I was 13) but I wasn't 'officially' diagnosed until 1999.

I suffer from a variety of symptoms and I'm constantly learning more about the condition and I think it's so funny how things click and I realize that yes, this is just another part of FMS. Some of the things that plague me are: extreme fatigue (very debilitating and energy draining), insomnia, which doesn't help my fatigue or pain!, pain pretty much everywhere...I can tell when the weather is changing or the air pressure changes, depression/anxiety (CBT helps here!), and noise sensitivity which is quite hard for me to deal with sometimes.

In addition to FMS I also have chronic asthma and severe allergies so sometimes I feel like I'm fighting an uphill battle! For the most part, I try to stay positive about life and my illnesses and try not to let anything get in the way of achieving my goals.

I've been on so many drugs for FMS that I can't remember them all! Amitriptiline (sp?) was one of the drugs and I was on that for several years but I hated the side effects and you are supposed to avoid direct sunlight. I love the sun and it brightens my mood so I haven't been on that medication for quite a few years. I was on Nerontin (sp?) for a few years as well which was great for the pain but I didn't like being on a drug that altered my brain chemistry that much. At one point I was on Nerontin for pain, a drug to stay awake and give me energy during the day, and something to put me to sleep at night. That is when I put a stop to everything and went to eating healthier, getting massages and seeing a therapist. I have also added more exercise, long baths/soaks in a hot tub, and taking advil as needed to my list. Due to EXTREME fatigue and insomnia I have had to add taking a sleeping pill back to my list for the past 2 1/2 years. I just can't sleep without it (though sometimes I can get a brief nap in the afternoon).

Living with this disease SUCKS! I'm 31 years old, yet most days I feel like I'm 100. I'm so tired and sore and stressed out and it's hard on my family when I'm grouchy because I'm so tired of dealing with everything. I DO try to stay positive and identify what is causing me to feel yucky and I tell my DS, DH and DD when I'm feeling especially crumby so that they know if I yell or snap it's not them...it's just something I can't control at the moment.

Currently I'm preparing for our first trip to WDW in 13 days!!! I just got home from 8 days at the cabin and DS is going to spend some time with his grandparents starting tomorrow so I'm trying to pack for him. I'm the packer, cleaner, planner and organizer in our household so while all this is exciting (and I'm so HAPPY to get to go to WDW) it is also overwhelming and stressful. My family doesn't really understand why I'm so grouchy all of a sudden but there is just so much to do before we go!

Anyways, I look forward to hearing from everyone and I hope I can provide some support when needed!

Welcome Ladybug:welcome:

We have lots to chat about! You sound alot like me. Usually I write novels:rotfl2: but today I just want to mention a couple of things. If you have a verizon smartphone you might want to look into mobile magic it is an ap that will give you wait times and schedule in real time at WDW. I used Ridmax and it saved my life! It will allow you to plan based on historical and recent wait times. during our may trips is was accurate withn three minutes!:cool1: We rarely waited in a line more than 5 min. I assume a this time a year it would be closer to 30. The one day in two trips we didnt use it ride times were 30-40min.

Try to give yourself a few bedrest days the days right before you travel. I needed the two weeks before and it helped alot.

If you look back on my previous posts I have given rundowns on my survival tricks. Use "may" in the search words and it should pare it down;)

I'll be back to catch up later. Hi to all:wave2:

Sending pain free vibes:goodvibes and pixie dustpixiedust: to all

[lady_bug_888]

Hi Tiggspring!

Thanks for the welcome and advice! I have been looking at the advice of everyone on this thread for my upcoming trip. I don't have verizon as I'm Canadian and we don't have verizon up here. I will have my cell but it's not something fancy like an iphone. It's very basic and I really only have it for emergencies. It would be neat to have a phone that could give me up to date wait times though!

I plan on using touring plans to help me plan out my trip but I might check out ridemax as well!

I'll try to rest for a few days before the trip but it's really hard with a 1 yr. old running (crawling) around. She keeps me pretty busy and with DS gone, I don't have a helper while DH is at work. My babysitter just had a baby so I can't even drop the baby off while I have a nap :(

I do write novels when I post so I'm sorry to all those who hate reading through them! DH says I even leave long voice messages and he's started talking back to me more than once on a voice message!

I managed to get DS packed for WDW today, so I'm 1/4 done. The hardest to pack for will be DD because I have to remember all the baby stuff but I have a really good packing list, so hopefully I won't forget anything!

Hope everyone had a good day today!

[tiggspring]

Hi Tiggspring!

Thanks for the welcome and advice! I have been looking at the advice of everyone on this thread for my upcoming trip. I don't have verizon as I'm Canadian and we don't have verizon up here. I will have my cell but it's not something fancy like an iphone. It's very basic and I really only have it for emergencies. It would be neat to have a phone that could give me up to date wait times though!

I plan on using touring plans to help me plan out my trip but I might check out ridemax as well!

I'll try to rest for a few days before the trip but it's really hard with a 1 yr. old running (crawling) around. She keeps me pretty busy and with DS gone, I don't have a helper while DH is at work. My babysitter just had a baby so I can't even drop the baby off while I have a nap :(

I do write novels when I post so I'm sorry to all those who hate reading through them! DH says I even leave long voice messages and he's started talking back to me more than once on a voice message!

I managed to get DS packed for WDW today, so I'm 1/4 done. The hardest to pack for will be DD because I have to remember all the baby stuff but I have a really good packing list, so hopefully I won't forget anything!

Hope everyone had a good day today!

I think you will love ridemax. Look for an ecode I think I got $4 off. One big plus was my kids didnt fight or whime about next ride. They gave me their top #3 rides for adding to the list and knew the list ment short line...no arguing:cool1: even my 4 yr old got that! Check ridmax first. It will save you a ton of time planning:thumbsup2 It is fun to see how changing where you go can change how much time you spend in line!

[tiggspring]

Here is the like to the ridemax users thread...goes all the way back to 2008.

http://www.disboards.com/showthread.php?t=2118681


ridemax
http://www.ridemax.com/

Cant find coupon code but price down from 24.95 to 18.95. Just pick your rides and shows and let it make your plans. We picked half the park to focus on at MK and it worked GREAt for walking. Put in your breaks or meal spots then let it make a plan. It will tell you how many minutes walking/ min waiting and riding. It picks the shortest distance with best waits so no cross park trips. tweek your plans and print out.:cool1: You will be surprised how much time you will save by getting to the park early...going on rides like Dumbo right at opening (dont think thats running now:sad1:. It amazed me how one or two things could add up to big waits. It also amazed me that we could do more than I ever imagined based on my wait time estimates.

Dont forget to consider two things. 1. At MK taking the train to adventureland first thing. With FMS and little kids it will take you 10 MIN walk (at least) to get back there. Take the first train and you will be fresh as a daisy at the empty part of the park in aprox 10min. 2. If you cannot go back to your room, taking in a show like Mickeys Philharmagic and then having sit down meal and then going to another show say the laugh factory means you will be sitting and in ac most of a 2hr period. Almost as good as a nap. This is where ridmax will be good a telling you what to put when. You can also block out Free tme if the computer model is not working for you and just add in what you want to free time.

If you are staying on property they have heating pads and other odd things available at housekeeping. Changing stations have lots of kid stuf too. We didnt bring our tether on our first trip because DD4 was a great walker and held hands (didnt need stroller:worship:) then she decided she would wander like crazy at epcot.:scared1: So we got a wrist tether. DH said they had a whole store full of stuff in there!

hope this helps.;)

[tiggspring]

Bumping up to see how everyone is doing.

After my dads visit I crashed an have had nearly a constant headache...mostly migraines. Making me long for school because kids cant keep quiet long enough for me to fight them off:headache:. Bouts of insomnia too:sad2:.

On the upside I have almost all my kids school shopping complete. DH business got another client:cool1: and i have joined the human race and played Angry birds during one of those insomniac nights:rotfl2:

I'm also feeling better about my upcoming cruise. Checked online and the rush must have slowed down because you can still get a room in my cat. (maybe lucky find?) However that room would cost us $2,000 MORE:scared1: I would never have started looking til about now if I hadn't seen a few things here on the Dis that made me ask in FEB as to when to book. All I can say is WOW who is paying that! Anyone thinking of cruising book 16 months out for cheapest deal. You can now get room for Christmas 2012:eek: Really the prices will give you a heart attack on top of the Fibro/Cfids:lmao:

Hope all those trips went well.

[tiggspring]

Hey Eduke did you survive the storm up in NE? When did you get your power back? Last I knew my family in RI/Conn/ME still had no power. My friends were all back online. Stunniing what happened in VT:eek:. Who ever would have thought it would go that far inland with more than a good soaking?????



I know several of you are recovering from your trips others are dealing with flares. I crashed after a visit with my Dad. Weight loss stopped dead :sad2:. I had 15 days straight migriane which was fun with 3 kids home 24/7 .I have adjsted to kids return to school better than expected:worship: I was waking on my own around 8-9 and sleeping earlier:dance3: just beore school started so the earlier mornigns are not klilling me like last year. I do however fall alseep sitting up every morning as I sit to drink a well desearve cup of tea after getting them off to school. Pain is high. But as most of you know I much prefer pain cycles as I have many ways to deal with pain. Just not able to fight fatigue.

I have a corner of my house clean and hoping if I can hold onto this cycle I will get it done this year. Is been 6 yrs since it was really tidy (not spotless). The day I could no longer afford our nanny was the last day my house didnt look like a mini version of horders:rotfl2:.

I have done two things to make things a bit easier. I bought a pressure cooker:thumbsup2 and I bought a ROOMBA AND I LOVE IT!!!. This little vaccume does one of the hardest jobs for me vaccuming. With the kids and the cats not knowing that everthing shouldnt go on the floor it seemed like my life was doomed to be full of stepping on old cereal and cat hair ewwww:guilty:. This vac does about 95% of what my normal vac does. Bonus?? my kids ar e so facinated by it that they cleaned their rooms so it could vaccum their floors:woohoo::woohoo::woohoo: Who knew that a vuccum could get your kids to clean their rooms:lovestruc?

Fibro advice this month...Buy a robot to do your vaccuming:rotfl2:

Sending pain free vibes:goodvibes and pixie dust to allpixiedust:

[EDuke98080]

Hey Eduke did you survive the storm up in NE? When did you get your power back? Last I knew my family in RI/Conn/ME still had no power. My friends were all back online. Stunniing what happened in VT:eek:. Who ever would have thought it would go that far inland with more than a good soaking?????



I know several of you are recovering from your trips others are dealing with flares. I crashed after a visit with my Dad. Weight loss stopped dead :sad2:. I had 15 days straight migriane which was fun with 3 kids home 24/7 .I have adjsted to kids return to school better than expected:worship: I was waking on my own around 8-9 and sleeping earlier:dance3: just beore school started so the earlier mornigns are not klilling me like last year. I do however fall alseep sitting up every morning as I sit to drink a well desearve cup of tea after getting them off to school. Pain is high. But as most of you know I much prefer pain cycles as I have many ways to deal with pain. Just not able to fight fatigue.

I have a corner of my house clean and hoping if I can hold onto this cycle I will get it done this year. Is been 6 yrs since it was really tidy (not spotless). The day I could no longer afford our nanny was the last day my house didnt look like a mini version of horders:rotfl2:.

I have done two things to make things a bit easier. I bought a pressure cooker:thumbsup2 and I bought a ROOMBA AND I LOVE IT!!!. This little vaccume does one of the hardest jobs for me vaccuming. With the kids and the cats not knowing that everthing shouldnt go on the floor it seemed like my life was doomed to be full of stepping on old cereal and cat hair ewwww:guilty:. This vac does about 95% of what my normal vac does. Bonus?? my kids ar e so facinated by it that they cleaned their rooms so it could vaccum their floors:woohoo::woohoo::woohoo: Who knew that a vuccum could get your kids to clean their rooms:lovestruc?

Fibro advice this month...Buy a robot to do your vaccuming:rotfl2:

Sending pain free vibes:goodvibes and pixie dust to allpixiedust:

Hi Tigg! Thanks for the shout out! We have had a rough summer here in New Enlgand. We live about a 1/4 mile from the path of the 39 mile tornado that hit June 1st. We have to replace our roof and some siding but nothing like the people who were literally demolished and lost everything. We also felt the rumblings of that earth quake a couple weeks ago AND lost a huge pine tree in our yard from Irene. Who would think in New England and all in one summer! :confused3

So glad you are accomplishing thngs around the house, it is such a good feeling! I love your vacuum info too. My nephew has one and raves about it!

I have been fighting a major flare, feeling so exhausted and painfull. I keep thinking there must be something wrong with me... and then go oh yeah fibro and my herniated disks. Sat and had a major self pity cry this afternoon poor DH didnt know what to say or do.

Hope Fall treats everyone well and that folks are feeling better than I am at the moment. Sending some Pain free PD to all!

Erika

[SeaSpray]

Hi everyone :wave2:

tiggspring: my DSister has a Roomba and she loves it. And a pressure cooker sounds like a great idea. Dumb question: Is a pressure cooker similar to a crockpot? I have a crockpot and I really need to find more recipes so that I can use it more often. Coming home at the end of the day and cooking is my least favorite thing.

I hope everyone is feeling ok. :grouphug:

[tiggspring]

Hi Tigg! Thanks for the shout out! We have had a rough summer here in New Enlgand. We live about a 1/4 mile from the path of the 39 mile tornado that hit June 1st. We have to replace our roof and some siding but nothing like the people who were literally demolished and lost everything. We also felt the rumblings of that earth quake a couple weeks ago AND lost a huge pine tree in our yard from Irene. Who would think in New England and all in one summer! :confused3

So glad you are accomplishing thngs around the house, it is such a good feeling! I love your vacuum info too. My nephew has one and raves about it!

I have been fighting a major flare, feeling so exhausted and painfull. I keep thinking there must be something wrong with me... and then go oh yeah fibro and my herniated disks. Sat and had a major self pity cry this afternoon poor DH didnt know what to say or do.

Hope Fall treats everyone well and that folks are feeling better than I am at the moment. Sending some Pain free PD to all!

Erika


Erika So sorry about flare. Did all that work you did at tax time trigger it? As far as the weather sorry about your tree we have a beautiful tree in our frount yard that I would hate to lose. Glad it wasnt any worse.

Our little tornado event in may ended up being a blessing in disguise. While my van has quite a few dents my house is getting a new roof. We had a roofer come out since they have flooded our area since the storm and ours is from 1984. We planned on replacing it in a few years since this year it was the car, and heating sytem at the top of the list. Well who knew that hail damage ment full replacement by insurance:banana::banana:. Doesnt matter how old the roof is if it has enough "hits" it gets replaced by insurance. It must be something banks got passed by legislators because I cant see insuarance companies replacing a 30 yr old roof at 100% because they feel bad for me:lmao:

So in the next few eeks we will be a construction zone as we get new heat...no more oil for me:cool1: and new roof...no more leaks/ice dams either:cool1::cool1:

Hi everyone :wave2:

tiggspring: my DSister has a Roomba and she loves it. And a pressure cooker sounds like a great idea. Dumb question: Is a pressure cooker similar to a crockpot? I have a crockpot and I really need to find more recipes so that I can use it more often. Coming home at the end of the day and cooking is my least favorite thing.

I hope everyone is feeling ok. :grouphug:


I just LOVE MY ROOMBA:lovestruc I should have made it a priority years ago. I always put myself last

[tiggspring]

Hi everyone :wave2:

tiggspring: my DSister has a Roomba and she loves it. And a pressure cooker sounds like a great idea. Dumb question: Is a pressure cooker similar to a crockpot? I have a crockpot and I really need to find more recipes so that I can use it more often. Coming home at the end of the day and cooking is my least favorite thing.

I hope everyone is feeling ok. :grouphug:

As far as the pressure cooker its great. In many ways it is like a crockpot on steroids. I can unthaw a roast in about 10 min in micro (still slightly frozen) prep meal and brown meat a bit in pot then throw everything in bring it to pressure and cook about 10min +/- . Meal done from frozen in 30 min :thumbsup2. I bought an origonial style stove top version in 8 quart for its versitility and beacase I could technically use it on my cook stove in a power outage and use it as a large pot when I need a secound one. I bought miss vickie's pressure cooker book which is great. I mostly get recipies from Allrecipies.com there are a few sites devoted to pressure cooking and crocks too. My main back up for the crock is any salad dressing in with whatever meat I have ....usually works great beacuse there is some vinager in all dressings which tenderizes the meat. When my large crock died last year I got one with a thermometer probe and I have found the meat cooks much faster in that mode so I can take a roast out of freezer unthaw in micro "(still slightly frozen) put in probe and roast is done in 4 hrs or less. So if I have my act together by 2pm I can still use the crock for supper.

Hope this helps. Definately consider the pressure cooker. Great for days when I feel like crude right up until dinner. I love cooking. I do everything from home made fudge and cheese cake to remaking meals we get at resteraunts like wdw scotch eggs but I always have to consider the work in clean up :sad2:

BTW if you hate cooking consider using crocks for chrismas dinner. I go all out at Thanksgiving..everything from scratch. Christmas I dont want to cook. I make fire and spice ham Christmas eve in crock with some special sides... last year it was green beans w artichokes and rumplethumps (special mashed potatos) the for christmas I put in a chistmas pork roast with druied apples/dates etc in crock and make pumpkin bread pudding with bourbon sauce in second crock. We have a quishe ( I make night before and thow in) and sticky rolls from a can and jar fruit in am. So while I do a bit christmas eve day we eat without me cooking on christmas and live on leftovers for several days after:goodvibes the pudding recipie comes from Slow Cooker cooking by laura brody. It has many fancy recipies ment for crocks.

[tiggspring]

How is everyone this weekend?

seaspray...found another plus with stovetop pressure cooker. Mine keeps food piping hot for hours if you naturally depressure and leave lid on with burner off. Great for nights my DH gets home 2-3 hrs after we eat.:thumbsup2

[tiggspring]

Hi guys

A friend of my just sent me an article on a new strain of lyme disease that did not show up on previous lyme tests. For those who dont know lyme has all the symptoms we have and is caused by a tick bite. Those us us on the east coast know lyme well it has been spreading with more cases in mid west where I now live Western Pa. It is treatable with antibiotics.

http://www.nytimes.com/2011/09/20/health/20tick.html?_r=2

Sending pain free vibes:goodvibespixiedust: and pixie dust to allpixiedust:

[tiggspring]

Roll call:rotfl:How are you guys?


This weather is killing me:headache: Raining for 15 days and COLD! We are having our furnace put in at the moment so no heat for awhile longer. Now they found a problem within the support wall between our old log cabin (1790-1810) and the addition put on in 1983:headache: Guess it will be a day or two more to see if we need a support beam..


I know everyone is having a real hard time but I hope you find the energy to post. I miss the conversations we used to have here.


For any lukers who are newly diagnosed here are two basic articles on additives to avoid with Fibro and tactics to improve your quality of life

http://www.everydayhealth.com/pain-management/6-food-additives-to-subtract-from-your-diet.aspx?xid=aol_eh-pain_4_200111003&aolcat=HLT&icid=maing-grid7%7Cmain5%7Cdl7%7Csec1_lnk3%7C101189


http://www.everydayhealth.com/fibromyalgia/feel-better-with-fibromyalgia.aspx?xid=aol_eh-fibro_1_200111003&aolcat=AJA&icid=maing-grid7%7Cmain5%7Cdl7%7Csec3_lnk2%7C101189

Sending pain free vibes:goodvibes and pixie dust to allpixiedust:

[SeaSpray]

How is everyone this weekend?

seaspray...found another plus with stovetop pressure cooker. Mine keeps food piping hot for hours if you naturally depressure and leave lid on with burner off. Great for nights my DH gets home 2-3 hrs after we eat.:thumbsup2

Thanks so much for all of the info on pressure cookers. I appreciate it. :) Right now, I have ribs in the crockpot for dinner tonight. It's a new thing I'm trying, I've actually never made ribs at home before. They smell good, I just hope that all of us like them made this way. lol

Roll call:rotfl:How are you guys?


This weather is killing me:headache: Raining for 15 days and COLD! We are having our furnace put in at the moment so no heat for awhile longer. Now they found a problem within the support wall between our old log cabin (1790-1810) and the addition put on in 1983:headache: Guess it will be a day or two more to see if we need a support beam..


I know everyone is having a real hard time but I hope you find the energy to post. I miss the conversations we used to have here.


For any lukers who are newly diagnosed here are two basic articles on additives to avoid with Fibro and tactics to improve your quality of life

http://www.everydayhealth.com/pain-management/6-food-additives-to-subtract-from-your-diet.aspx?xid=aol_eh-pain_4_200111003&aolcat=HLT&icid=maing-grid7%7Cmain5%7Cdl7%7Csec1_lnk3%7C101189


http://www.everydayhealth.com/fibromyalgia/feel-better-with-fibromyalgia.aspx?xid=aol_eh-fibro_1_200111003&aolcat=AJA&icid=maing-grid7%7Cmain5%7Cdl7%7Csec3_lnk2%7C101189

Sending pain free vibes:goodvibes and pixie dust to allpixiedust:

Thanks for the links to the articles, I will read them after I finish this post. :surfweb:

I'm sorry that you're feeling so bad right now. :hug: I'm home sick again today (missed yesterday, too). I have a desk job with not much stress at all, and my office is very physically comfortable, so it's pretty bad when I decide that I can't make it in to work. :sick: I don't get paid when I'm out because I used up all of my sick time months ago.

I hope that your house gets taken care of soon, and that it isn't too costly.

I have to say that I love that you realize that we might not feel well enough to do something as simple as post a reply on a message board. So many people would not understand that at all. Unless you live with this, it's hard for people to understand the utter exhaustion. :faint: Thanks so much for posting, we know we're not alone in this. :grouphug:

[tiggspring]

Thanks so much for all of the info on pressure cookers. I appreciate it. :) Right now, I have ribs in the crockpot for dinner tonight. It's a new thing I'm trying, I've actually never made ribs at home before. They smell good, I just hope that all of us like them made this way. lol



Thanks for the links to the articles, I will read them after I finish this post. :surfweb:

I'm sorry that you're feeling so bad right now. :hug: I'm home sick again today (missed yesterday, too). I have a desk job with not much stress at all, and my office is very physically comfortable, so it's pretty bad when I decide that I can't make it in to work. :sick: I don't get paid when I'm out because I used up all of my sick time months ago.

I hope that your house gets taken care of soon, and that it isn't too costly.

I have to say that I love that you realize that we might not feel well enough to do something as simple as post a reply on a message board. So many people would not understand that at all. Unless you live with this, it's hard for people to understand the utter exhaustion. :faint: Thanks so much for posting, we know we're not alone in this. :grouphug:



Thanks for the house pixie dust on the cost ;)

Just had roast in pressure cooker w vegtable cooked in beer...soooo good and done in 25 min and fell apart:thumbsup2 You will love pressure cooking if you like crocks.

:hug: from pa feel good soon!

[TLSnell1981]

Well, I crashed at the end of each of our last two trips, August and September. The second was worse..five migraines in seven days and a stomach virus. Now, getting ready for Disney. Im really hoping, third time's a charm.

[tiggspring]

Well, I crashed at the end of each of our last two trips, August and September. The second was worse..five migraines in seven days and a stomach virus. Now, getting ready for Disney. Im really hoping, third time's a charm.

Sending pixie dust your waypixiedust:

[Leota]

Hi -this thread is a God-Send! I'm so new to this whole thing - still going thru the endless rounds of testing, but PCP & I are pretty sure it's Fibro, altho rhum wants to take another look at auto-immune....

I thought I had lost my mind. I don't understand how I went from hiking & doing yoga everyday, cooking extravagant gourmet meals & keeping a spotless house after helping hubby at his business all day to needing a handicap sticker & an ECV some days. I'd KILL to be able to do a yoga class again!

Can I ask a question? It's probably covered in this thread, but I only read the first couple & last page so far...... this is a BIG thread! ;)

This whole thing started with me in May & has progressively gone downhill. There are a few decent days, but mostly not so much. I heard that it gets better, that eventually, it'll be flares. Right now seems like one big flare. Will I ever have a string of normal days again?

Also, tell me about doing Disney with this. It's been years since we were commando, so that's not an issue. How do you do Disney with the flares? I can't picture being in the Parks how I felt the last couple days (rain, ugh!)

[SeaSpray]

Hi -this thread is a God-Send! I'm so new to this whole thing - still going thru the endless rounds of testing, but PCP & I are pretty sure it's Fibro, altho rhum wants to take another look at auto-immune....

I thought I had lost my mind. I don't understand how I went from hiking & doing yoga everyday, cooking extravagant gourmet meals & keeping a spotless house after helping hubby at his business all day to needing a handicap sticker & an ECV some days. I'd KILL to be able to do a yoga class again!

Can I ask a question? It's probably covered in this thread, but I only read the first couple & last page so far...... this is a BIG thread! ;)

This whole thing started with me in May & has progressively gone downhill. There are a few decent days, but mostly not so much. I heard that it gets better, that eventually, it'll be flares. Right now seems like one big flare. Will I ever have a string of normal days again?

Also, tell me about doing Disney with this. It's been years since we were commando, so that's not an issue. How do you do Disney with the flares? I can't picture being in the Parks how I felt the last couple days (rain, ugh!)

First of all, I want to say that I'm really sorry that this has hit you. :sad2: It's a very misunderstood syndrome, and because people LOOK healthy on the outside, there's no way that anyone without it can fully understand what we're feeling on the inside.

I have had to use an ECV while at WDW for a few years now. It's just a fact of life, and if I want to enjoy the parks and get any farther than the entrance of Main Street USA, then I need to use the scooter. The first couple of times we used a regular wheelchair, but I found that I didn't like having to depend on someone else to push me around. The ECV is a God-send during vacation. I rent one from an outside company and they have it waiting at the resort for me, at check-in.

There will be times where you will have a string of days where you will feel good. The term "good" is relevant, unfortunately. I haven't felt "normal" in decades, so to me, when I feel "good", that means the absense of severe pain and stiffness, no major brain fogginess, and the energy to get through my normal day (work at a desk for 7 hours, cook dinner, maybe throw in a load of laundry and put it all away, and not fall asleep for a few hours in the evening before bed. lol).

I have found that getting enough sleep (DH and I are natural night-owls so we really have to force ourselves to go to bed at a decent time); try to lower the stress in your life (I know, often easier said than done sometimes); eat healthy foods (when you feel like you're going to keel over, sometimes ordering pizza is the "healthiest" option for dinner that you can muster :sad2: ), and getting a minimum of exercise, really helps.

For me, exercise consists of walking around the office building every half hour or so, just to keep my limbs moving (I also have rheumatoid arthritis), and walking up and down the stairs a few times at night at home, doing laundry or other things. :tiptoe: Seriously, at this point, that's the extent of my exercise regiment. The last time I tried to start a walking program, I was "rewarded" with one of the worst flares that I've ever had and took me weeks to recover from. :headache:

Best wishes to you. Please post as much as you want, we understand. :hug:

[Leota]

Hi SeaSpray! I "recognize" you from around the boards. Sorry to run into you this way tho.

Do you know of other fibro boards & good sites for me to get info from? Like I said, I'm new at this. I do believe knowledge is power, so any info/sites/boards whatever anyone can share, I'd love it. I'm up to about pg. 15 now & so glad to know I'm not alone & not crazy. I have other health issues which muddy the picture a bit too.

I have another question - did anyone else start out with gastro symptoms? I started out with horrible gastro problems & now they're tolerable with lots of meds & mods. The fatigue & pain came on last, but hard!

Also, how on earth do you keep yourself from over doing it n the "good" days? Any day that my pain is less than a 5 or 6, I just want to cram everything in & then I'm shot again. Like right now, I'm at a 6 - I'm forcing myself to lie in bed because I know I need to baby myself for our big trip - but I also want to do a million things because we're going on a big trip. :rolleyes: It's our 20th anniversery & I really want us to be able to enjoy it. This has been so hard on DH, poor thing. He's so worried that I'll be too sick to enjoy it that he's making himself sick. It's only a week and a half away & it's been pretty bad the past 4-5 weeks esp.

[EDuke98080]

Hi SeaSpray! I "recognize" you from around the boards. Sorry to run into you this way tho.

Do you know of other fibro boards & good sites for me to get info from? Like I said, I'm new at this. I do believe knowledge is power, so any info/sites/boards whatever anyone can share, I'd love it. I'm up to about pg. 15 now & so glad to know I'm not alone & not crazy. I have other health issues which muddy the picture a bit too.

I have another question - did anyone else start out with gastro symptoms? I started out with horrible gastro problems & now they're tolerable with lots of meds & mods. The fatigue & pain came on last, but hard!

Also, how on earth do you keep yourself from over doing it n the "good" days? Any day that my pain is less than a 5 or 6, I just want to cram everything in & then I'm shot again. Like right now, I'm at a 6 - I'm forcing myself to lie in bed because I know I need to baby myself for our big trip - but I also want to do a million things because we're going on a big trip. :rolleyes: It's our 20th anniversery & I really want us to be able to enjoy it. This has been so hard on DH, poor thing. He's so worried that I'll be too sick to enjoy it that he's making himself sick. It's only a week and a half away & it's been pretty bad the past 4-5 weeks esp.

HAve you been tested for Celiac disease? When finally diagnosed with that and on a gluten free diet my fibro improved. It also took care of ALL my years of gastro symptoms with no meds. Just something to think about! I also find that I usually do ok traveling and crash when I get home. I think the adrenalin kicks in and gets me through the trip.

[SeaSpray]

Hi SeaSpray! I "recognize" you from around the boards. Sorry to run into you this way tho.

Do you know of other fibro boards & good sites for me to get info from? Like I said, I'm new at this. I do believe knowledge is power, so any info/sites/boards whatever anyone can share, I'd love it. I'm up to about pg. 15 now & so glad to know I'm not alone & not crazy. I have other health issues which muddy the picture a bit too.

I have another question - did anyone else start out with gastro symptoms? I started out with horrible gastro problems & now they're tolerable with lots of meds & mods. The fatigue & pain came on last, but hard!

Also, how on earth do you keep yourself from over doing it n the "good" days? Any day that my pain is less than a 5 or 6, I just want to cram everything in & then I'm shot again. Like right now, I'm at a 6 - I'm forcing myself to lie in bed because I know I need to baby myself for our big trip - but I also want to do a million things because we're going on a big trip. :rolleyes: It's our 20th anniversery & I really want us to be able to enjoy it. This has been so hard on DH, poor thing. He's so worried that I'll be too sick to enjoy it that he's making himself sick. It's only a week and a half away & it's been pretty bad the past 4-5 weeks esp.

Hi Leota :wave2: Nice to see you too, but wish it was on a different thread. :upsidedow

This is the only fibromyalgia thread that I post on. It's going to sound funny, but I often don't have the energy to type, so I'm hesitant to seek out a fibromyalgia forum because I don't know how much I'd be contributing. As it is, sometimes I feel bad about not posting here more.

However, there are sites out there with information. I don't know any offhand, but if you do a search you will see them. :surfweb:

HAve you been tested for Celiac disease? When finally diagnosed with that and on a gluten free diet my fibro improved. It also took care of ALL my years of gastro symptoms with no meds. Just something to think about! I also find that I usually do ok traveling and crash when I get home. I think the adrenalin kicks in and gets me through the trip.

I've had irritable bowel syndrome since my early 20's (I'm 50 now). It wasn't officially diagnosed until about 10 years ago, though. I've been tested for celiac, but the test came back negative. I have thought about trying the celiac diet, just out of curiosity to see if it would help anyway.

I have the same exact experience that EDuke has while on vacation; the adrenalin kicks in and I usually feel well enough (although I still can't walk any distances, no matter how good I feel), and then I crash bad after I get home. I feel like I've been hit by a truck, and it usually takes me a few weeks to recover. :sad2: Having said that, our vacations are definitely worth it and I wouldn't miss them for anything. :cool2:

[SeaSpray]

Ok.... I'm not crazy, it's just fibromyalgia. LOL I just did a Google search to see if I could find any specific forums for Leota.... well, I came across a couple of them. One of them wanted $25 to become a member in order to access the forums.

The other one is www.fibromyalgia.com and is free to join and post on their forum. So...I figured, what the heck, I'll sign up! :surfweb:

Much to my surprise, after I entered all of my info, a message popped up telling me that my email address is already registered. Hmm.... I don't remember doing that! :scratchin

So I clicked on the "Send me my login info" button, and pretty soon I had what I needed to log in to the site.

Imagine my surprise when I see that not only had I registered, but I had also put my photo in my profile. :lmao: LOL It says that I joined 13 months ago. I swear, I have no memory of doing this! I don't think that I ever posted on the site because it says "0" posts. LOL

Anyway.... that's a free forum, if anyone is interested! lol

[Leota]

Ok.... I'm not crazy, it's just fibromyalgia. LOL I just did a Google search to see if I could find any specific forums for Leota.... well, I came across a couple of them. One of them wanted $25 to become a member in order to access the forums.

The other one is www.fibromyalgia.com and is free to join and post on their forum. So...I figured, what the heck, I'll sign up! :surfweb:

Much to my surprise, after I entered all of my info, a message popped up telling me that my email address is already registered. Hmm.... I don't remember doing that! :scratchin

So I clicked on the "Send me my login info" button, and pretty soon I had what I needed to log in to the site.

Imagine my surprise when I see that not only had I registered, but I had also put my photo in my profile. :lmao: LOL It says that I joined 13 months ago. I swear, I have no memory of doing this! I don't think that I ever posted on the site because it says "0" posts. LOL

Anyway.... that's a free forum, if anyone is interested! lol

Thanks for the giggle. :lmao: and the info. I'll check it out.

I went off gluten & dairy back in May - testing was screwy because I was already GFDF, but I showed immune response to gluten, no lactose, but dairy makes me sick, so I assume casein. Peanuts were gone years ago. And eggs seem to be a new thing since I made the mistake of getting a flu shot. It's funny because the original symptom has mostly cleared up (big D) and now it's lack of appetite, naseau, stomach pain, vomiting etc... instead. Looking at doing an intolerance panel, but the ones I see people using out there are not approved or insurable yet. I don't mind paying, but I don't want to get scammed either.

Now it seems like I feel every single minute sensation as pain, haven't been able to deal with things like bras, jewelry, seatbelts etc.... in months.... and then there's the pain, the muscle cramps, spasms, twitches, insomnia, brain fog, crushing fatigue, dry mouth, etc.... I have some good coping tools, but frankly, sometimes I'm just too wiped out to make myself use them....

I am trying to pamper myself. Luckily, my guys are letting me do what I have to do. I am hoping that the combo of relaxation, sun, excitement, Pixie Dust works Magic on this body. :wizard: But you know, if I crash after, I crash. It is what it is. I'm trying really hard to accept things. It's tough sometimes tho.

Thanks for talking to me. It's been kind hard to explain to people what I feel like. It's nice to get it off my chest to people who understand. :goodvibes

[tiggspring]

Leota,

:welcome:

I'm usually quite chatty as you have probably seen but the past few weeks I have been swamped and now need to really rest. If you post here usually most days it goes direcdtly to my droid and I can get back to you asap. My DD 7 had a big birthday party this weekend which pulled me offline for the week. As you have seen people are very supportive here even if it just a quick I'm soooo tired/in pain and need some pixie dust;) I tried other sites many years ago but found them a bit negative and depressing. I think Disney freeks tend to look at the brighter side of things when they can.

I did remember I posted on my survival tips for WDW a few years back below is that post. I would now add ...combine miday sit down lunch with two shows ie mickey philharmagic. Crt and monsters inc. It will give you aprox 2 hrs sitting down in ac mid day. Closest thing to a mid day nap (I did sleep in American adventure mid day:rotfl:) Hope this helps. Look forward to seeing you around. Its been quiet around here hopefully we will all get back posting more soon:hug:


Sending pain free vibes :goodvibes and pixie dust to allpixiedust:











Dana

As far as Disney I was determined to not use a scooter last year. I wanted my vacation to be a vacation from everthing including the Fibro ( I know wishful thinking). Looking at a scooter after ever ride would have ruined the magic so I planned to the extreme and it worked for a week and then I crashed for several and it took months to get back on my feet. I know he two week crash was due to the trip. Not sure what casues the next 9 months:confused3.

The top two things that helped were staying in May because I'm intollerant of heat/cold and staying in Tahiti at the poly so I could get back to the room quickly to allievate a migraine or crash. Extra driving and/or busses is just too much for me over 7 days. I see you going in May so that a big plus:thumbsup2

These things helped me. 1. I packed a month in advance and stayed in bed as much as possible the week before we went. So I was not stressing about bags the week before we went or over exerting myself. Since we went in May I bought all of our summer clothes shoes and just packed them right away. 2. Each kid even my 4 yr old had a fanny pack with a fan mister (hanging outside), drink, snack ,hand wash, autograph book and pen, penny press book, neck cooler and map. This kept everyone independant and stopped mom from searching for everything every time someone needed something small:thumbsup2 3. USE RIDEMAX!!! I cant say enough about this program. We waited on average 5 min. It was right on the money and the kids didnt fight all week! each kid gave me their must see rides for the day and they new the list would avoid lines so they didnt fight over who got to pick the next ride and Mom and Dad didnt "play favorites" because it was the list that told us where to go. It basicly keep us moving for 5min standing for 5min then the ride or show. This pattern really kept me from getting too tired and too stiff :worship:Priceless on so many levels.4. To avoid exhastion I planed to do one side of the park per day. On the day we went to Adventure land we took the train at opening and since I'm slow we arrived in the same amount of time as it would have taken to walk .5. ( you might not want to do this) I pulled myself off my pain meds the month before I went because they stop working after awhile. by doing this they worked much better on my trip. I also got some stronger meds from my DR in case of an emergency 6. we kept a link to all ears menues and the Dis snack thread on our black berry. while we were in line the kids would decide what they wanted to eat then there was no meltdowns while dinning and we got our meals much faster. You could also print them out. 7. we were a bit fanatical about purell on/off rides and clorox wipes on remotes/doornobs in the room. I knew several people who went last May all got sick but us so it must have worked;)8.We laid out all the clothes the night before so Mom did'nt have to go looking in the AM. I could take a shower every morning as well as every night to avoid stiffness. Our biggest problem last year was packing back up:sad2: so this year we are ging to AK our last full day so we have a bit more time in the hotel room. I am also planning to put each days dirty clothes in a large ziplock then having DH put them in an empty suitcase in our van every am before we go out. The Handicap parking is really close to Tahiti so we pass it any time we go on the ttc and we will be mostly packed by Fri!

Really it came down to obsessive planning based on my Fibro and my kids habits.

hope this helps!

[tiggspring]

Big list of 60 Fibromyalgia symptoms


After 16 years I my chest pain has an actual diagnosis!


http://chronicfatigue.about.com/od/whatisfibromyalgia/a/fibrosymptoms.htm

[EDuke98080]

Big list of 60 Fibromyalgia symptoms


After 16 years I my chest pain has an actual diagnosis!


http://chronicfatigue.about.com/od/whatisfibromyalgia/a/fibrosymptoms.htm

Thanks for that list. I am sure others will find it helpful to see that all this stuff we go through is all interrelated.

Been rough here lately. Our area got slammed with the snow last Saturday and for the third time this year declared a federal disaster area. As I type they are stripping our roof which had damage from the tornado in June. Will be replaced by the end of the week.

I hope everyone is doing well!

Erika

[tiggspring]

Thanks for that list. I am sure others will find it helpful to see that all this stuff we go through is all interrelated.

Been rough here lately. Our area got slammed with the snow last Saturday and for the third time this year declared a federal disaster area. As I type they are stripping our roof which had damage from the tornado in June. Will be replaced by the end of the week.

I hope everyone is doing well!

Erika

Erika it is so good to see you!!!:goodvibes What else are you up to besides cleaning up disaster zones:hug:


I had posted imediatly after you but its not here:confused:


I feel your contruction pain.:hug: At this moment gutter guys are on my roof fixing things that were damaged during our March tornado. Ma and PA tornados ....crazy:scared1:. We got the snow too about 6 inches but we still have power:worship::worship:

Our roof was done a few weeks ago just as we were getting our heating system we waitied 6 yrs to put in. In the middle we had to replace a support beam (gotta love really old houses) but we are warm:lovestruc. Skylight to be replaced in a week or two if we dont get more snow:headache:

I was trying to exersize but pain sidetracted me for 6 days:sad2: sad since I only got about 5 days in. Today got on the wii and lost another 3 lbs (20total):thumbsup2 then the wii congratulated me on reaching a new goal...10hrs yea for me:yay::yay: 10hrs in 10 months:lmao: I'm a bit worried because I need to lose another 30 to be my pre crash WDW2010 weight. I was pleasantly plump:sad2: then , now just fat:eek:. If I can stay in pain mode instead of fatigue mode I can potential lose 60lbs before my cruise which would be my old normal weight. SEND PIXIE DUST PLEASE....heck I would be thrilled with 40lb more and happy with 30. Weight loss really out of my hands but one can hope;)

Pain free vibes:goodvibes and pixie dustpixiedust: to all

[SeaSpray]

Hi everyone :wave2:

Wow, I have 43 of the 60 symptoms listed in that article. I'm not surprised though. :headache:

I'm in southeastern MA and we were spared the worst of the snow storm. I feel so badly for those who lost power. It was strange to see school closings on the news in the mornings. We've really had extreme weather this year.

The weather does a number on my fibromyalgia symptoms, including a major increase in headaches, almost every day. :headache:

Last Tuesday night DH and I went with DS20 and his DGF to Providence to see "Les Miserables". That's my favorite play. We had a great time, but boy did I pay for it the next day. I couldn't get out of bed. I had to miss work, and I was in fairly bad pain.

Ah well, such is the life of someone with this ridiculous "disease".... :sad2:

Anyway, I wanted to stop in to say hello, and that I hope everyone is doing ok, dealing with their individual issues. :grouphug:

[tiggspring]

Hi everyone :wave2:

Wow, I have 43 of the 60 symptoms listed in that article. I'm not surprised though. :headache:

I'm in southeastern MA and we were spared the worst of the snow storm. I feel so badly for those who lost power. It was strange to see school closings on the news in the mornings. We've really had extreme weather this year.

The weather does a number on my fibromyalgia symptoms, including a major increase in headaches, almost every day. :headache:

Last Tuesday night DH and I went with DS20 and his DGF to Providence to see "Les Miserables". That's my favorite play. We had a great time, but boy did I pay for it the next day. I couldn't get out of bed. I had to miss work, and I was in fairly bad pain.

Ah well, such is the life of someone with this ridiculous "disease".... :sad2:

Anyway, I wanted to stop in to say hello, and that I hope everyone is doing ok, dealing with their individual issues. :grouphug:

I know what you mean about the weather. When I lived in NE my symptoms changed alot because the barmetric shifts from the ocean. They didnt just change day to day but hour to hour! My husband used call me barometer woman because I could tell the shifts up and down and confirm them on the weather channel:rotfl2: It was kind of a sick game in our house.

When we were in WV there was bearly any fluctuations and it made a big differnence! Now its better than NE but we are just close enough to the great lakes that I notice the shifts again although it is alot less violent to my system.

[Leota]

Well, I made it thru the vacation! :thumbsup2 It was wonderful. Disney knows how to accommodate everyone. It's really wonderful. Universal, not so much.....

Anyways....how on earth do you recover from it? I've been bedridden for 2 days so far....:sick:

I think it turned out extra hard because it got so cold & wet down there. Even the days the high would get up to 77 or so, around 1pm the clouds would roll in, the wind would kick up & the skies would start pissing. I was so cold & sore that I left the Parks at 2 one day & couldn't go back. :sad2:

I think we learned a couple valuable lessons tho: Travel alone (we bought Kids & Grandkids), no more waterparks, or at least slides & sand walking, afternoon soaks in the hot tub followed by a nap are a must. In fact, the vacation home with the private hot tub was a MUST. I used that 3 times a day,and I needed the kitchen due to all my food allergies. ECV was an absolute necessity, I could never have made it even once around any of the Parks. No more "winter" trips. Anything under 85 & sunny is just too cold for me right now. :sad2: DH is talking about moving us south. I have been the holdout on that, but this is pushing me over the edge. If he was amenable to the Orlando are tho..... :rolleyes1

[tiggspring]

Well, I made it thru the vacation! :thumbsup2 It was wonderful. Disney knows how to accommodate everyone. It's really wonderful. Universal, not so much.....

Anyways....how on earth do you recover from it? I've been bedridden for 2 days so far....:sick:

I think it turned out extra hard because it got so cold & wet down there. Even the days the high would get up to 77 or so, around 1pm the clouds would roll in, the wind would kick up & the skies would start pissing. I was so cold & sore that I left the Parks at 2 one day & couldn't go back. :sad2:

I think we learned a couple valuable lessons tho: Travel alone (we bought Kids & Grandkids), no more waterparks, or at least slides & sand walking, afternoon soaks in the hot tub followed by a nap are a must. In fact, the vacation home with the private hot tub was a MUST. I used that 3 times a day,and I needed the kitchen due to all my food allergies. ECV was an absolute necessity, I could never have made it even once around any of the Parks. No more "winter" trips. Anything under 85 & sunny is just too cold for me right now. :sad2: DH is talking about moving us south. I have been the holdout on that, but this is pushing me over the edge. If he was amenable to the Orlando are tho..... :rolleyes1

So Glad you had a good time:dance3:

As far as recovery last trip it took me the better part of a year to catch up:mad: In part becase my kids had a very rough summer behavior wise and I never got a good break after our May vaca so I just dragged along and gained 50 lbs:eek: If i hadnt had kids home from school I think it would have taken about 6 weeks and ALOT of bedrest to get back on my feet. Our first trip I was better by fall. It just never ends with kids and that a death nell to recovery with FMS.I dont think there is much you can do to speed up recovery. Thats why I always plan to the max to manage things at WDW so I can avoid an even bigger crash.I know with 5 of us it was tough . I can only imagine how hard it was with 3 generations to manages schedules, expectations and the need to say I cant do that. When family is visiting I ALWAYS crash even after just a few days. I just cant juggle their needs and mine:sad2: even though they try very hard not to tax me I get adrenilin rushes just from talking long periods to catch up then I get exhasted. Just the joy of having company is too much exersion:mad:


I totally get the benifits to staying in condo etc. That is the only way I really do well managing my FMS on vacation. The benifits of staying at POLY really come down to transportation for me the extra 20 to 40 min travel to stay at cheaper resorts or offsite just make it impossible. That 1+ hours in transit just makes me lose to much energy I need for the parks. If I had to sty off site an evc would be the only way I could do it and that just takes the magic out of it for me. For a few days I like to pretned Im ok and while that takes alot of meds, planning and an inevitable crash it also gives me hope that someday maybe I'll be me again..tigger the one that can bounce around and do anything. I know that is crazy after 17yrs and stubborn but there you are.

I think your right about the weather. Being there in May is an absolute must. Not to hot/cold, no hurricains yet and less rain than Oct. My DH and I talk about spending the winter as snow birds in Hawii when we retire (havent been there yet;)) maybe him picking up a teaching gig out there every year so we can afford it. I dont like FL enough to spend a whole season there.

Sending pixie dust your way for a speedy recovery:wizard:

Sending pain free vibes:goodvibes and Pixie dust to allpixiedust:

[SeaSpray]

Well, I made it thru the vacation! :thumbsup2 It was wonderful. Disney knows how to accommodate everyone. It's really wonderful. Universal, not so much.....

Anyways....how on earth do you recover from it? I've been bedridden for 2 days so far....:sick:

I think it turned out extra hard because it got so cold & wet down there. Even the days the high would get up to 77 or so, around 1pm the clouds would roll in, the wind would kick up & the skies would start pissing. I was so cold & sore that I left the Parks at 2 one day & couldn't go back. :sad2:

I think we learned a couple valuable lessons tho: Travel alone (we bought Kids & Grandkids), no more waterparks, or at least slides & sand walking, afternoon soaks in the hot tub followed by a nap are a must. In fact, the vacation home with the private hot tub was a MUST. I used that 3 times a day,and I needed the kitchen due to all my food allergies. ECV was an absolute necessity, I could never have made it even once around any of the Parks. No more "winter" trips. Anything under 85 & sunny is just too cold for me right now. :sad2: DH is talking about moving us south. I have been the holdout on that, but this is pushing me over the edge. If he was amenable to the Orlando are tho..... :rolleyes1

I'm glad that you had a great trip, but I'm sorry and can commiserate with you on the "recovery" afterwards. :sad2: Unfortunately, with fibromyalgia, it's a price we have to pay for everything that we do.

You came to a lot of the same conclusions that I did, a while ago, in regards to making trips as stress-free as possible, needing to use an ECV, and going at a time of year when the weather will be as nice as possible. I can't do the waterparks or anything like slides anymore. :sad2: It's just not worth feeling like I've been beaten up and recovery taking even longer. I can't ride roller coasters anymore, either. I used to be able to ride ANY kind of ride, and I loved it. Now I just feel too banged up afterwards. Test Track is about as rough of a ride that I can handle these days.

Oh well, I tell myself that things can always be worse. I try and stay positive. :)

So Glad you had a good time:dance3:

As far as recovery last trip it took me the better part of a year to catch up:mad: In part becase my kids had a very rough summer behavior wise and I never got a good break after our May vaca so I just dragged along and gained 50 lbs:eek: If i hadnt had kids home from school I think it would have taken about 6 weeks and ALOT of bedrest to get back on my feet. Our first trip I was better by fall. It just never ends with kids and that a death nell to recovery with FMS.I dont think there is much you can do to speed up recovery. Thats why I always plan to the max to manage things at WDW so I can avoid an even bigger crash.I know with 5 of us it was tough . I can only imagine how hard it was with 3 generations to manages schedules, expectations and the need to say I cant do that. When family is visiting I ALWAYS crash even after just a few days. I just cant juggle their needs and mine:sad2: even though they try very hard not to tax me I get adrenilin rushes just from talking long periods to catch up then I get exhasted. Just the joy of having company is too much exersion:mad:


I totally get the benifits to staying in condo etc. That is the only way I really do well managing my FMS on vacation. The benifits of staying at POLY really come down to transportation for me the extra 20 to 40 min travel to stay at cheaper resorts or offsite just make it impossible. That 1+ hours in transit just makes me lose to much energy I need for the parks. If I had to sty off site an evc would be the only way I could do it and that just takes the magic out of it for me. For a few days I like to pretned Im ok and while that takes alot of meds, planning and an inevitable crash it also gives me hope that someday maybe I'll be me again..tigger the one that can bounce around and do anything. I know that is crazy after 17yrs and stubborn but there you are.

I think your right about the weather. Being there in May is an absolute must. Not to hot/cold, no hurricains yet and less rain than Oct. My DH and I talk about spending the winter as snow birds in Hawii when we retire (havent been there yet;)) maybe him picking up a teaching gig out there every year so we can afford it. I dont like FL enough to spend a whole season there.

Sending pixie dust your way for a speedy recovery:wizard:

Sending pain free vibes:goodvibes and Pixie dust to allpixiedust:

We stay only at the Polynesian now, too, for the convenience factor, for the same exact reasons you said. If we stayed at a different resort (non-monorail), the time needed to get back and forth would exhaust me. Also, our favorite parks are MK and Epcot, so the monorails, and using an ECV, are priceless.



I will be laid off on December 30th, and for physical reasons, I can't wait. I feel like I haven't been able to recover and get back any real measure of energy, in years.


I hope everyone is having a good week. It's hasn't been the best week for me, it feels like every nerve, muscle, and bone hurts, to some degree. Fortunately ibuprophen has been helping. Last weekend I was in a lot of pain and ended up taking muscle relaxers and Vicodin. It helps with the pain, but mostly makes me feel out of it, just enough so that I don't notice the degree of pain that I'm in. Those medications are good for the occasional weekend, but they're not good for daily use at all (drug dependency is a concern of mine because I've heard how easily it has happened to other people. :eek: ) So I limit the times that I will take prescriptions.

Bye for now, hope everyone is feeling a little better!

[tiggspring]

I'm glad that you had a great trip, but I'm sorry and can commiserate with you on the "recovery" afterwards. :sad2: Unfortunately, with fibromyalgia, it's a price we have to pay for everything that we do.

You came to a lot of the same conclusions that I did, a while ago, in regards to making trips as stress-free as possible, needing to use an ECV, and going at a time of year when the weather will be as nice as possible. I can't do the waterparks or anything like slides anymore. :sad2: It's just not worth feeling like I've been beaten up and recovery taking even longer. I can't ride roller coasters anymore, either. I used to be able to ride ANY kind of ride, and I loved it. Now I just feel too banged up afterwards. Test Track is about as rough of a ride that I can handle these days.

Oh well, I tell myself that things can always be worse. I try and stay positive. :)



We stay only at the Polynesian now, too, for the convenience factor, for the same exact reasons you said. If we stayed at a different resort (non-monorail), the time needed to get back and forth would exhaust me. Also, our favorite parks are MK and Epcot, so the monorails, and using an ECV, are priceless.



I will be laid off on December 30th, and for physical reasons, I can't wait. I feel like I haven't been able to recover and get back any real measure of energy, in years.


I hope everyone is having a good week. It's hasn't been the best week for me, it feels like every nerve, muscle, and bone hurts, to some degree. Fortunately ibuprophen has been helping. Last weekend I was in a lot of pain and ended up taking muscle relaxers and Vicodin. It helps with the pain, but mostly makes me feel out of it, just enough so that I don't notice the degree of pain that I'm in. Those medications are good for the occasional weekend, but they're not good for daily use at all (drug dependency is a concern of mine because I've heard how easily it has happened to other people. :eek: ) So I limit the times that I will take prescriptions.

Bye for now, hope everyone is feeling a little better!

Hay Seaspray just six months til the Dream Trip:dance3::dance3:

Sorry your having a hard time:hug:. The weather here has been all over th map and so have my symptoms. Im down 3lbs:banana: and in less pain but was literally comatosed two days, unable to wake once kids were in school sleeping whole days away and have had a migrine ever evening for more than two weeks now.:headache:

Congrats on the layoff!!!!:confused3???? are you going to apply for ssi? I know someone who still works part time and collects which is allowed. We have come along way from the days I applied and they didnt hink it was a disease and I got letters like we know you are in some discomfort.....when I was literally crawling form room to room:sad2:

One benifit to FMS is it allows me to splurg on myself. My dream was to stay at the Poly but I never would have even considered it before FMS. I was raised that spending money was wasteful and indugent. Well when we had no real choice but to stay at the Poly then got 40pct off my DH insisted we get MKV since we didnt know if we would ever get back. Well it Was WONDERFUL:lovestruc. It so made our trip to watch the castle change colors as I crashed for the night. Now I see the benifit on splurging once in awhille and we are staying in a family veranda room on the Dream and I dont feel guilty at all we have earned it. Now I wont be able to tell my mother about the trip until we are on the road and I will hear "you are going away again??!!" but I don care:cool1: I could never have done that before FMS even though my DH had been trying fo years to take care of me before the Fibro:love:

hugs to all:grouphug:

[EDuke98080]

Hi All!

Hope you aare all doing better than I am! I fell this week, tripped actually and landed flat and hard on my butt. I twisted my ankle and bruised my arm and really aggravated my herniated disks. Ugh so much pain! On top of that my Thanksgiving dinner for 11 has turned into dinner for 22 and overnight guests. Normally I love to do the holiday even though it exhausts me but I am fairly useless at the moment and I know it is not going to be as perfect as I will want it to be. I have spent most of the week on the couch with my tens machine on my back while watching my DH bust his butt to finish riding the yard of all the damaged tree limbs from the freak snowstorm we had AND do all of the household work AND cart me around because it hurts so much to sit that I cannot drive. I feel really guilty watching him work so hard while I am the giant lump on the sofa.

Happy Thanksgiving to everyone, I hope it is relaxing and pain free!

Erika

[tiggspring]

Hi All!

Hope you aare all doing better than I am! I fell this week, tripped actually and landed flat and hard on my butt. I twisted my ankle and bruised my arm and really aggravated my herniated disks. Ugh so much pain! On top of that my Thanksgiving dinner for 11 has turned into dinner for 22 and overnight guests. Normally I love to do the holiday even though it exhausts me but I am fairly useless at the moment and I know it is not going to be as perfect as I will want it to be. I have spent most of the week on the couch with my tens machine on my back while watching my DH bust his butt to finish riding the yard of all the damaged tree limbs from the freak snowstorm we had AND do all of the household work AND cart me around because it hurts so much to sit that I cannot drive. I feel really guilty watching him work so hard while I am the giant lump on the sofa.

Happy Thanksgiving to everyone, I hope it is relaxing and pain free!

Erika

Oh Erika I'm sooooo sorry.:hug: I cant imagine dinner for 22:scared1:. I love to cook but just having my DD godmother and her daughter for a long weekend put me in a comatosed state for two days.:headache:

Sending lots of pixie dust your way. If its any conselation I havent bought a thing yet for Thanksgiving...just started to pull out all those recipies..I feel like I'm about two weeks off and Turkey day is in ten days not 5:eek:

Pain free vibes:goodvibesand pixe dust to allpixiedust:


Happy Thanksgiving!

[Leota]

I can't imagine doing Thanksgiving for 22! I'm barely able to think about our dinner for 9 & I'm not even hosting it! But we do have to make the turkey, gravy, cranberry sauce, and if I'm up to it, a few sides or a plate of sides I can eat. My food intolerance issues make it tricky to eat anywhere, so I have to bring my own. I'm just so Grateful my Mom insisted on hosting this year. I can barely drag myself out of bed right now.... still recovering from our trip.

Last week was insane with Drs. Left Rhuematology in tears again. My PCP is firing this rhuem & sending me to another one because they have been supremely unhelpful, they keep blaming my AIDS even tho my ID Drs are telling them this is not AIDS related. (My T-cells are higher than they've been in 17 years) Then I had a 3 hour appt. for my 2nd opinion from GI & that was actually wonderful. They are really working hard at getting me some relief from the constant nauseau.

DH & I also came to the decision it's time for me to stop working again. I have only been working part-time with DH at his office, but I can't even keep up with that anymore. It's best for all of us if we get someone dependable in there to relieve the stress from all of us. I'm relieved that I'll be able to take care of my body right now, but also feeling nervous about the financial ramifications & about feeling like a burden.

I am looking forward to things calming down a little.... does that ever really happen? ;)

[tiggspring]

To tired to respond to posts...just thought I'd send a hidiho!:wave2:

[EDuke98080]

I can't imagine doing Thanksgiving for 22! I'm barely able to think about our dinner for 9 & I'm not even hosting it! But we do have to make the turkey, gravy, cranberry sauce, and if I'm up to it, a few sides or a plate of sides I can eat. My food intolerance issues make it tricky to eat anywhere, so I have to bring my own. I'm just so Grateful my Mom insisted on hosting this year. I can barely drag myself out of bed right now.... still recovering from our trip.

Last week was insane with Drs. Left Rhuematology in tears again. My PCP is firing this rhuem & sending me to another one because they have been supremely unhelpful, they keep blaming my AIDS even tho my ID Drs are telling them this is not AIDS related. (My T-cells are higher than they've been in 17 years) Then I had a 3 hour appt. for my 2nd opinion from GI & that was actually wonderful. They are really working hard at getting me some relief from the constant nauseau.

DH & I also came to the decision it's time for me to stop working again. I have only been working part-time with DH at his office, but I can't even keep up with that anymore. It's best for all of us if we get someone dependable in there to relieve the stress from all of us. I'm relieved that I'll be able to take care of my body right now, but also feeling nervous about the financial ramifications & about feeling like a burden.

I am looking forward to things calming down a little.... does that ever really happen? ;)

It is so frustrating dealing with the medical professionals sometimes. Sorry your RH made you so upset but glsd the GI was helpful. We have Celiac times 3 at our house so I understand your cooking for yourself. That is why we usually host as well. Hope you get the rest you need!

[EDuke98080]

To tired to respond to posts...just thought I'd send a hidiho!:wave2:

Hi Tigg! :flower3:

Hope you are doing ok!

[SeaSpray]

Hi All!

Hope you aare all doing better than I am! I fell this week, tripped actually and landed flat and hard on my butt. I twisted my ankle and bruised my arm and really aggravated my herniated disks. Ugh so much pain! On top of that my Thanksgiving dinner for 11 has turned into dinner for 22 and overnight guests. Normally I love to do the holiday even though it exhausts me but I am fairly useless at the moment and I know it is not going to be as perfect as I will want it to be. I have spent most of the week on the couch with my tens machine on my back while watching my DH bust his butt to finish riding the yard of all the damaged tree limbs from the freak snowstorm we had AND do all of the household work AND cart me around because it hurts so much to sit that I cannot drive. I feel really guilty watching him work so hard while I am the giant lump on the sofa.

Happy Thanksgiving to everyone, I hope it is relaxing and pain free!

Erika

I'm so sorry to hear about your fall. :( I hope you're feeling a little better now. How was your big dinner? We only had the 4 of us (plus DS's DGF who came over later for dessert, which she baked for us), and I was exhausted. That's great that your DH took care of so much.

I can't imagine doing Thanksgiving for 22! I'm barely able to think about our dinner for 9 & I'm not even hosting it! But we do have to make the turkey, gravy, cranberry sauce, and if I'm up to it, a few sides or a plate of sides I can eat. My food intolerance issues make it tricky to eat anywhere, so I have to bring my own. I'm just so Grateful my Mom insisted on hosting this year. I can barely drag myself out of bed right now.... still recovering from our trip.

Last week was insane with Drs. Left Rhuematology in tears again. My PCP is firing this rhuem & sending me to another one because they have been supremely unhelpful, they keep blaming my AIDS even tho my ID Drs are telling them this is not AIDS related. (My T-cells are higher than they've been in 17 years) Then I had a 3 hour appt. for my 2nd opinion from GI & that was actually wonderful. They are really working hard at getting me some relief from the constant nauseau.

DH & I also came to the decision it's time for me to stop working again. I have only been working part-time with DH at his office, but I can't even keep up with that anymore. It's best for all of us if we get someone dependable in there to relieve the stress from all of us. I'm relieved that I'll be able to take care of my body right now, but also feeling nervous about the financial ramifications & about feeling like a burden.

I am looking forward to things calming down a little.... does that ever really happen? ;)

How frustrating, having to keep trying to find the "right" doctors, while you're so much in need of some relief. I can understand your decision to stop working. Due to the company that I work for being in bankruptcy, I only have until the end of December to work, and boy that cannot come soon enough. I am constantly exhausted and fighting sore throats, etc.

To tired to respond to posts...just thought I'd send a hidiho!:wave2:

I can relate to this. :wave2: It took me a few days to get back to this thread, even though I wanted to post a few days ago.

[Leota]

OK, so the Holidays are interesting in this new body..... I've been working at decorating the tree for a week now. I get on about 5 ornaments at a time & then my arms give out. Any tips? I think the guys are going to have to help me finish it. I did decide not to do all the decorating I usually do. I kind of wish I hadn't started the tree, but you gotta have a tree, right?

My Dr. started me on Gabapentin for the RLS, leg cramp, neuropathy, spasms & insomnia part of the puzzle. I had gotten down to sleeping only about 3 hours a night & was dragging badly. The gabapentin is helping, but I think we'll have to throw in the Elavil because I'm still waking, just not wide awake - enough to stop the healing deep sleep. I was trying to do it as holistically as possible, but was having no luck.

Sending you all Pain Free & Good Day Vibes!

[tiggspring]

:wizard::wizard:OK, so the Holidays are interesting in this new body..... I've been working at decorating the tree for a week now. I get on about 5 ornaments at a time & then my arms give out. Any tips? I think the guys are going to have to help me finish it. I did decide not to do all the decorating I usually do. I kind of wish I hadn't started the tree, but you gotta have a tree, right?

My Dr. started me on Gabapentin for the RLS, leg cramp, neuropathy, spasms & insomnia part of the puzzle. I had gotten down to sleeping only about 3 hours a night & was dragging badly. The gabapentin is helping, but I think we'll have to throw in the Elavil because I'm still waking, just not wide awake - enough to stop the healing deep sleep. I was trying to do it as holistically as possible, but was having no luck.

Sending you all Pain Free & Good Day Vibes!

Have you tried the suppliment meletonin? I take half of a 3mg dose sometimes full dose with milk and it helps both me and my DH. just make sure itdoesnt interact with any of your meds. Its the natural hormone your body makes to sleep so it it generally safe with drugs.

I'm all over the place. Getting lots done then wham so tired I'm almost comatosed. fall asleep in mid/late afternoon sitting up and cannot wake up. Glad my DD is almost 13 and other two are older too. I can take a nap now and not worry so much as long as I'm in the house they are ok to roam the house without me. Plus they have to shut off alarm system to go outside and it sounds off in my bedroom so I know they are going nowhere:rolleyes1

will try to catch up more later...tired, tired and more tired:headache:

sending pain free vibes:goodvibes and pixie dust to all:wizard:

[SeaSpray]

Hi everyone :wave2:

I hope you are all doing ok. I've had a lot of pain-filled days recently. Weeks, actually. It has become my new "normal". :headache: Oh well. I keep telling myself that things could be worse, so I try not to dwell too much on being depressed about it. :confused:



Erika, how are you feeling these days???? :hug:



OK, so the Holidays are interesting in this new body..... I've been working at decorating the tree for a week now. I get on about 5 ornaments at a time & then my arms give out. Any tips? I think the guys are going to have to help me finish it. I did decide not to do all the decorating I usually do. I kind of wish I hadn't started the tree, but you gotta have a tree, right?

My Dr. started me on Gabapentin for the RLS, leg cramp, neuropathy, spasms & insomnia part of the puzzle. I had gotten down to sleeping only about 3 hours a night & was dragging badly. The gabapentin is helping, but I think we'll have to throw in the Elavil because I'm still waking, just not wide awake - enough to stop the healing deep sleep. I was trying to do it as holistically as possible, but was having no luck.

Sending you all Pain Free & Good Day Vibes!

My DH was recently started on Gabapentin for diabetic neuropathy in his feet. He's been diabetic for several years now, but the neuropathy is fairly new. He sees a specialist in Boston. His next appointment is February 1st, and I will go with him. We'll ask about being a bit more aggressive with his treatment.

Leota, not getting decent sleep is one of the worst things, especially when you are in pain which good sleep would help. It's a vicious cycle. My DH also takes 5mg of Ambien every night. I take it too. We've been taking it nightly for a couple of years now, but on the weekends we try to skip it, and it has not negatively effected us, as far as we can tell. In other words, we're able to sleep, as long as we're tired enough, without it, on the weekends. We tried melatonin but it didn't seem to help either of us. But it's a good place to start. Just be sure to read up on it, because it works with your bodys' own rhythm, and so they suggest that you take it and go right to bed (darkness) so that your body can recognise the time to go to sleep, along with the melatonin. *Sorry if I'm not making sense, this is a low brain-function day for me*. :upsidedow

:wizard::wizard:

Have you tried the suppliment meletonin? I take half of a 3mg dose sometimes full dose with milk and it helps both me and my DH. just make sure itdoesnt interact with any of your meds. Its the natural hormone your body makes to sleep so it it generally safe with drugs.

I'm all over the place. Getting lots done then wham so tired I'm almost comatosed. fall asleep in mid/late afternoon sitting up and cannot wake up. Glad my DD is almost 13 and other two are older too. I can take a nap now and not worry so much as long as I'm in the house they are ok to roam the house without me. Plus they have to shut off alarm system to go outside and it sounds off in my bedroom so I know they are going nowhere:rolleyes1

will try to catch up more later...tired, tired and more tired:headache:

Tigg, that happens to me all the time, too. I get up in the morning to go to work, sit at my desk all day (accounting), then I need a nap by the time I get home, just to be able to make/order dinner and stay awake for the evening. It feels like such a waste of time, all this sleeping, but it's beyond my control. I'm just really worried that once I'm laid off of work at the end of this month that I won't be getting out of the house early and will end up sleeping my days away. :sad2: That's what mostly happens right now on the weekends. I'm going to have to make sure that doesn't happen.


I hope everyone has a good pain-free day!! :sunny: :wizard:

sending pain free vibes:goodvibes and pixie dust to all:wizard:

[tiggspring]

Merry Christmas one and all!

Hope Santa filled your stocking with lots of energy :santa:

[EDuke98080]

Merry Christmas one and all!

Hope Santa filled your stocking with lots of energy :santa:

Merry Christmas to you as well! Hope everyone is doing ok after the busy time of year.

[tiggspring]

Happy New Year!party:

[tiggspring]

Roll Call:rotfl:


Well I finally feel a bit more stable. DH has been home most of the time since the thur before Christmas. Between holidays vacation and him putting his back out the past three days its seems he'll never leave!:lmao: The good thing is it has given me 10 days of vaca with no scouts, lessons, school etc so it was PJ's , video games and 8 Harry Potter nights for us. Finally I felt a bit cought up rest wise. Him just being home means I dont have to drag all the kids everywhere which is a TREAT! The result is I'm down 6 lbs (ater gaining 7:mad:) and I have been exersizing more.

We got the kids a 360 with Kinect for Christmas and with my money I bought Disneyland:goodvibes and Kinect your shape. This added with Dance 3 and I have a prety comprehensive exersize playlist Now for those you considering getting the Kinect I should warn you and can be exhasting.

Disneyland it fun, very detailed veiw of the park although I do feel a bit silly at times. Not sure why, whats the differnece between this and Mario? Anyway Disneyland requires you to stand and use your outstretched arm as a way to push your way though the crowd. (everyone moves out of your way!:yay:) I find I have to switch arms often to keep from getting a sharp pain in my shoulder. Some of the rides require outstreted arms for flying, opening portals to space etc, sometimes you dance a bit (nothing fancy!) and occationally you jump, lean or duck. Nothing too hard but then for us just standing can be a job:laughing: Anyway it is FUN and a good starting point. TIP kinect doesnt register your feet so if you have pain in your knees, cant jump or are too pooh sized to move like that just bending your knees is enough!:thumbsup2

Dance 3 is GREAT FUN but exhasting. Again I dont move my feet much but it is a great way to burn calories fast 10min is my limit.

Finally Kinect shape is HARDER than wii fit. I have a hard time doing this for more than 10 min because the pace is hard for me. I'm enjoying Baliwood dance and try to do 50 cal a day. It does challenge me though.

I have been trying to do 10 min of shape then Dance then use Disney as a cooldown. Its been a week and so far so good.

Wonder if that makes up for the nap my body continues to force me to take from 9 til 12 or so? Still falling asleep sitting up!:sad2:

Well thats my update for now.

Sending pain free vibes:goodvibes and pixie dust to all!pixiedust:

[tiggspring]

roll call


I'm all over the place. Dr visit and blood work were good:thumbsup2 weight down:thumbsup2 exersizing a few days a week:thumbsup2 BUT falling asleep everyday after kids go to school for 3 to 4 hrs :headache:

[EDuke98080]

Hi Tigg!

Will catch up soon!

Erika

[carrie6466]

Hi Everyone. Popping my head in for the first time in months. Cold, tired, whole house sick on and off since Dec. I think we've finally beat that, though! Still working on getting the Christmas decorations down. No one seems to care that they are still up, so I try not to let it bother me LOL. We did a lot yesterday. Today I just want to get dd off to school and go back to bed. UGH. Hope everyone's holidays went well :)

[yoopermom]

Hi, everyone, coming out of lurking to let you know that my DF62 (who was diagnosed with fibro maybe ten years ago, but has suffered with it probably twice that long) had to have emergency gallbladder surgery last week. He also has atrial fibrilation (sp?) that is usually controlled with medication, sleep apnea, and sinus issues. I continually advocated for him (since the first few days he was incoherent/delirious from fever), and I actually had the anesthesiologist say to me, "Thank you for telling me about the fibro, a lot of people don't mention it, and there ARE things I can do to make him more comfortable." He had some complications, and is recovering much slower than most patients would, but at least he IS recovering!

Terri

[tinkerbellandeeyor]

Hi everyone I was diagnosed at age 23

[tiggspring]

Welcome Newbies!!!:welcome:


If you look under my posts I have posted quite a few things in the past about studies about fibromyalgia and web pages about the 60 symptoms etc. I would drag them all up now but frankly I'm quite tired and dealling with an infection so not up to searching myself. Everyone here is great and very understanding. Usually we answer pretty quick alothough it seems most of us have been in a slump for awhile now.

I'm still in a pain cycle so trying really hard to lose weight. Joined WISH here, not the compitition but general support thread. Down 30 bls from my peak and need to lose another 30+ to be where I was before my major crash of 2010. Finally taking my vitamins/suppliments like I should and tryong to use the xbox 5 days a week for 30 min. Mostly making 3 days but thats better than before. It's been a real mixed bag. Having good day, exersizing getting stuff done then day or two of completely passing out when kids go to school and sleeping til noon or later:scared1:. Tried coffee and sitting on couch only to wake up not knowing how I fell asleep sitting up with tv and slept that way for hours!:sad2: I'm still doing better than even a few months ago so I'll take it:thumbsup2
Sending pain free vibes:goodvibes and pixie dust to all:wizard:

[SeaSpray]

Hi everyone :wave2: and :welcome: to the newcomers. This is a great group of people, very welcoming and friendly. :grouphug:

Tigg, you are right; I have been in a major slump for the last few weeks too. :headache:

I got laid off of work on December 30th. I knew the lay off was coming, so it wasn't a shock, in fact it was a relief. The next week, I felt fantastic! I got so much done that next week, it was amazing. lol

However, ever since then, I've been in a lot of pain, and extremely fatigued. :sad2: My plantar fasciitis has been very, very bad, I feel like I'm hobbling around worse than my mother did when was 80! I've been having to wear my sneakers and customer orthotics inside my house because of the pain.

Anyway.... enough about all that. I'm really most concerned with our Disney cruise in May. It's an 8-night cruise, from NYC to the Bahamas, including a day at Disney World in the middle of the cruise. I'm really doubtful that I'll be able to maintain stamina and not be in extreme pain during the trip. The only thing I think I can do is to lose weight, try and get my feet to not feel as if I'm walking over broken glass with each step, and probably will need to get a cortisone shot from the podiatrist right before the cruise. Blah.... How I wish that I could get up and not worry about the pain in each step. Fatigue is bad enough, but the pain when I do try to do something, makes me feel defeated before I even get going.

Ok.... once again...enough about all of THAT. :lmao: I honestly do try to be optimistic and positive, but I guess I feel more comfortable typing all of this out here on this thread, because I know that all of you understand what I'm going through. Also, I'm glad for the relative measure of good health that I do have, so I try not to complain.

Tigg: The same thing happens to me! LOL I get up early with DH, and I make the bed so that I won't be tempted to crawl back in after he leaves. So..... I end up straightening up the house, throwing in laundry, make a cup of coffee, etc... and since the house is basically in good shape to begin with, all of that doesn't take long, so I end up in the family room.... on the recliner.... with my heating pad... and the laptop... and the tv on... Next thing I know, I wake up and it's several hours later!! :eek: lol Sadly, it has become a habit lately. I really hate it. I hope that I snap out of this soon.

tinkerbellandeeyor: I'm so sorry that you've had this from such a young age. It seems that young people are coming down with different diseases at a younger age with each generation. :(

yoopermom: I'm glad that your DF is recovering, although slowly. That does seem to be very common for those of us with fibromyalgia. It was good that you mentioned it to the doctors. :)

:tink: Pain-free Pixiedust for everyone! :wizard:

[mommasita]

:) Hello. May I join?

I am 42, diagnosed a few years ago. I also have Syjrogens Syndrome, which has a LOT of the same symptoms as Fibro. I have 2 children almost 16, and almost 13. I also have a hubby who works completely insane hours.

I have tried numerous things over the years, and honestly NOTHING helps. NOw I just suck it up.

I've had 2 brain surgeries over the past 2 years, and one spinal for complications from a CSF leak after my last surgery. I have CHiair 1 malformation for life. (sorry if TMI)..

This month marks 3 years of disability for me, and I am HOPING to return shortly. I was feeling better, but that has dwindled with the winter and the COLD. I find I am at my worst with the changing of the seasons, so it is settling down a bit.

I get the results of my latest Brain MRI on Wednesday, and from there can ask for a gradual return to work. I only work 3 days per week, but the training will be 4 to 5 weeks FULL time, and my insurance does not see that going well, and work is insistant (and I understand the need).. I guess my fear is that an average day at home makes me exhausted, doubled with the migraines, and I find just keeping up the home: laundry, suppers, driving kids, etc overwhelming. They spoke about a rehab program to get me strong enough to endure 8 hour days.

sorry this is so long winded. I type most my feelings at night...

Sherrie

[tiggspring]

:) Hello. May I join?

I am 42, diagnosed a few years ago. I also have Syjrogens Syndrome, which has a LOT of the same symptoms as Fibro. I have 2 children almost 16, and almost 13. I also have a hubby who works completely insane hours.

I have tried numerous things over the years, and honestly NOTHING helps. NOw I just suck it up.

I've had 2 brain surgeries over the past 2 years, and one spinal for complications from a CSF leak after my last surgery. I have CHiair 1 malformation for life. (sorry if TMI)..

This month marks 3 years of disability for me, and I am HOPING to return shortly. I was feeling better, but that has dwindled with the winter and the COLD. I find I am at my worst with the changing of the seasons, so it is settling down a bit.

I get the results of my latest Brain MRI on Wednesday, and from there can ask for a gradual return to work. I only work 3 days per week, but the training will be 4 to 5 weeks FULL time, and my insurance does not see that going well, and work is insistant (and I understand the need).. I guess my fear is that an average day at home makes me exhausted, doubled with the migraines, and I find just keeping up the home: laundry, suppers, driving kids, etc overwhelming. They spoke about a rehab program to get me strong enough to endure 8 hour days.

sorry this is so long winded. I type most my feelings at night...

Sherrie

Welcome Sherriepixiedust:

It sounds like you have been through alot! As far as working you will have to find out how a few others here manage as I havent worked since 1994:sad1: After all these years I still, at least twice a year try to plan or someway to go back "if I can just get ....done" or "feel better for..... " and "maybe working as a ..." If I'm honset with myself I know I am blessed to be as active as I am right now. I have hopes for a cure even thought the xmrv virus studies I was so excited about and even tried to get into seemed to have been a dead end. Still I hope.

I realize you may have to do this rehab for work or disabilty etc to get benifits and if thats the case I hope some of the folks here have some good advice for you. If however if its really about you needing to go back to work I will give you a suggestion, be very careful going back. Know your body and listen..I wish I did.Here is how my Fibro progressed its the best way I know how to explain it.

When I first got sick I was working at a Childrens Psychatric hospital and had been attacted by a patient. That was not unusual, however the shoulder injury and subsequent migraines that followed were. I did the 6 weeks out routine and returned to work. I contined to have problems headaches, pain then a scary symptom, inability to get words out ( aphasia). So I quit my part time nurses aid job. Then the symptoms got worse. So I quit graduate school for my msw for which I was on the wait list for acceptance but still taking classes to get ahead. Next I left my job at the hospital to work the day shift in community mental health. All the time telling myself years of the night shift was getting to me.
At my new job I had control of my schedule. Soon I found I was working shorter hours on monday/ Friday and racing through the rest of the week by sheer will. I continued to do well at work even winning awards for my work at both the hospital (milue therapist of the YEAR!:thumbsup2)and service agency. However I was falling apart.

The result? The last seveal weeks of work I left several times a week with headaches etc. I had clients I had worked for for years at both sites who I couldnt remember their history. Finally I had a day where I could not figure out how to fill out a time sheet and found myself driving around a rotery for god knows how long not knowing how to get home. The next 2 years I was nearly always bedridding. Crawling to get from room to room when my husband was not there, sleeping 16- 20 hrs a day, a headache that lasted a year...yes not a day/minute without a headache:scared1:, sufering from many of the 60 Fibro symtoms all at once. In/out of the er , couldnt shower alone ...etc etc. It was nearly seven years before I could drive again.

I am convinced that trying so hard to go back and stay at work is why I never recovered those first two years and why I have such a hard time balancing my disease now. But I had worked in the family resteraunt since I was six years old. Always had a paying job since I was sixteen (often two) and just didnt feel human not working. ....sometimes I still dont.:sad2:

All of us have to find our path with this disease. Some can work, some cant. Some can go to WDW without a scooter and some cant. ( and some like me dont use it and crash for 6 months:rolleyes1).

You wont find a better group of people to help you figure out how you need to work this. Sometimes I find just putting it out there and knowing there are others helps me know what to do.:hug:

Sorry so long

Pain free vibes:goodvibes and Pixie dust to allpixiedust:

[SeaSpray]

:) Hello. May I join?

I am 42, diagnosed a few years ago. I also have Syjrogens Syndrome, which has a LOT of the same symptoms as Fibro. I have 2 children almost 16, and almost 13. I also have a hubby who works completely insane hours.

I have tried numerous things over the years, and honestly NOTHING helps. NOw I just suck it up.

I've had 2 brain surgeries over the past 2 years, and one spinal for complications from a CSF leak after my last surgery. I have CHiair 1 malformation for life. (sorry if TMI)..

This month marks 3 years of disability for me, and I am HOPING to return shortly. I was feeling better, but that has dwindled with the winter and the COLD. I find I am at my worst with the changing of the seasons, so it is settling down a bit.

I get the results of my latest Brain MRI on Wednesday, and from there can ask for a gradual return to work. I only work 3 days per week, but the training will be 4 to 5 weeks FULL time, and my insurance does not see that going well, and work is insistant (and I understand the need).. I guess my fear is that an average day at home makes me exhausted, doubled with the migraines, and I find just keeping up the home: laundry, suppers, driving kids, etc overwhelming. They spoke about a rehab program to get me strong enough to endure 8 hour days.

sorry this is so long winded. I type most my feelings at night...

Sherrie

Welcome Sherrie :welcome:

I'm so sorry to hear about your health problems. :hug: You've really been through a lot.

Nothing really helps my fibromyalgia symptoms. I take Lyrica, and I don't know whether it does any good or not because I don't know if I would feel worse without it. I don't have any negative side effects, so I continue to take it just in case it is helping a bit.

I just got laid off from work a month ago. It was a job that I loved in the accounting department of a finance company, but a year ago it was discovered that the owners were running a Ponzi scheme so the SEC and the state of Massachusetts threw the owners out and and until a month ago I was working for the state-appointed trustee. It was a very stressful period and it really wreaked havoc on my health.

Some days I went to work in a total fog but because I knew my job so well I was able to get through and still be accurate and get everything done each day. Oh, for the last year I was only person left in the accounting department because every one else was laid off a year ago.

Anyway, at this point I am collecting unemployment and I'm looking for work, but I know that it would be extremely difficult to walk in to a new situation.

I can understand your concerns about returning to work; I feel the same way, thinking that if I can't even get through a day at home in a normal way, how could I go and learn a new job. :guilty:

Stress is a very big factor in fibromyalgia. Even "good stress" such as a vacation can effect you negatively. Many of us can get through a vacation by adrenaline and the excitement of it, only to come home and "crash" and have our symptoms go haywire. :sad2: It's like we do something and then have to recover from it, even something like a vacation, or when I go out of state to visit family. Blah. This is no way to live. But then again, I think of my sister who has suffered with disease all of her life (asthma, cancer, Graves disease, brain tumor, should replacement surgery, etc etc), and how she remains positive despite all of that, and then I feel grateful that I "only" have fibromyalgia. I try to think about the good things, but sometimes it's very upsetting to feel young mentally but feel so old physically.

I think I'm rambling now... LOL

Welcome Sherriepixiedust:

It sounds like you have been through alot! As far as working you will have to find out how a few others here manage as I havent worked since 1994:sad1: After all these years I still, at least twice a year try to plan or someway to go back "if I can just get ....done" or "feel better for..... " and "maybe working as a ..." If I'm honset with myself I know I am blessed to be as active as I am right now. I have hopes for a cure even thought the xmrv virus studies I was so excited about and even tried to get into seemed to have been a dead end. Still I hope.

I realize you may have to do this rehab for work or disabilty etc to get benifits and if thats the case I hope some of the folks here have some good advice for you. If however if its really about you needing to go back to work I will give you a suggestion, be very careful going back. Know your body and listen..I wish I did.Here is how my Fibro progressed its the best way I know how to explain it.

When I first got sick I was working at a Childrens Psychatric hospital and had been attacted by a patient. That was not unusual, however the shoulder injury and subsequent migraines that followed were. I did the 6 weeks out routine and returned to work. I contined to have problems headaches, pain then a scary symptom, inability to get words out ( aphasia). So I quit my part time nurses aid job. Then the symptoms got worse. So I quit graduate school for my msw for which I was on the wait list for acceptance but still taking classes to get ahead. Next I left my job at the hospital to work the day shift in community mental health. All the time telling myself years of the night shift was getting to me.
At my new job I had control of my schedule. Soon I found I was working shorter hours on monday/ Friday and racing through the rest of the week by sheer will. I continued to do well at work even winning awards for my work at both the hospital (milue therapist of the YEAR!:thumbsup2)and service agency. However I was falling apart.

The result? The last seveal weeks of work I left several times a week with headaches etc. I had clients I had worked for for years at both sites who I couldnt remember their history. Finally I had a day where I could not figure out how to fill out a time sheet and found myself driving around a rotery for god knows how long not knowing how to get home. The next 2 years I was nearly always bedridding. Crawling to get from room to room when my husband was not there, sleeping 16- 20 hrs a day, a headache that lasted a year...yes not a day/minute without a headache:scared1:, sufering from many of the 60 Fibro symtoms all at once. In/out of the er , couldnt shower alone ...etc etc. It was nearly seven years before I could drive again.

I am convinced that trying so hard to go back and stay at work is why I never recovered those first two years and why I have such a hard time balancing my disease now. But I had worked in the family resteraunt since I was six years old. Always had a paying job since I was sixteen (often two) and just didnt feel human not working. ....sometimes I still dont.:sad2:

All of us have to find our path with this disease. Some can work, some cant. Some can go to WDW without a scooter and some cant. ( and some like me dont use it and crash for 6 months:rolleyes1).

You wont find a better group of people to help you figure out how you need to work this. Sometimes I find just putting it out there and knowing there are others helps me know what to do.:hug:

Sorry so long

Pain free vibes:goodvibes and Pixie dust to allpixiedust:

Tigg, I don't think that I ever knew your history. :hug:

[tiggspring]

Tigg, I don't think that I ever knew your history. :hug:[/QUOTE]


Wow realy? I thought I blabbed it so many times here on the Dis that people were sick of me:laughing: Let me catch you up on the rest.

Well there is one really miraculous part of the story. After two years of this unending hell, My infectious disease specialist (aka fibro specialist) had a chat about how she had seen very little work with FMS. How physical therapy usually failed because it was based on progressivly improving and FMS varies and downright rebels when you force it to progress. She always told me on good days do half of what you think you can do or your body will get back at you. As evident by my non wdw scooter days I always listen to that advice:laughing: She and her colleges across the country also saw little effect from drugs and some bad side effects like addiction/dependance. So she was causious with the meds. One at a time tiraiting up slowly and never expecting them to work as they did on normal patients. SO whats the miricle? My kids and for two big reasons.

In my first marrige My DH1 and I had to make a sad decsion when he developed Hodgkins disease. No kids. He was adopted and we had no history to determine if his disease ran in the family. So at 19 while planning a wedding we thought would be after graduation, we decided no kids:sad2: We got married. I went back to school. He got past his five year all clear check up when we were both 24 and we decided to put cancer behind us dropping out of a support group we had been with for 5 years. Now we would show up for the parties we thought. 6 weeks later he was gone. Developed leukemia from the meds he had taken before. Life support for 21 days, transplant lists ....it was a nightmare.

Then I met DH2. He was WONDERFUL to work with and very gentle about my widowhood since he watched his mother sufffer through it since he was 4. I asked him one day if I should stop talking about Kenny. His responce " any man not strong enough to handle you talking about him or knowing how much you loved him isnt man enough for you. I wouldnt want you to forget me if we were married" WOW I should have know I would marry him then:love:

So we got married and at 27 and 29 wanted kids a year or two into our marraige. Well six months in whamm fibro took eveything..except James:love:. 2yrs later ,13 drs, 2 years of tests and nearly completely bedridd my Dr told me two things. I needed to decide when I was going to stop searching for something she had never seen happen and have kids If I wanted them. "you dont want to be in your 40's looking at a potential cure but unable to have babies. You will always find a way to care for them and most of my patients go into a partial if not full remission"

Well after a little research and visiting an High risk OB specialist it was a go. We got pregnant the first try and I went into remission!!! About 80pct anyway. I loved being pregnant dispite the morning sickness every 2 hrs up til delivery:rotfl2: With each pregnancy I went into remission and watched my FMS come back in 6 month like a freight train comming at you that you cant stop. THere was a huge benifit though. I watched my syptoms come back without fear of dying from the chest pain, dizzy spells etc. I got to know how they progressed and how to manage them a little at a time.

It was after my son was born that I finally began driving. I knew when I was about to get a migraine and what visual coplications might be comming and that I had to be home in aprox 15 min. I could drive! It was two miricles in one. I had the babies I always wanted and they gave me a slice of my life back and a reason to go on:love:

We have three cord bloods stored up in MA. Who knows that my cure me too. Although we set them up in case the kids had a blood disease when they were young it is amazing the work being done on stem cells.

So now you now my story...:laundy:

[tiggspring]

Sea spray,

Wow what an ordeal! My DH worked for an agency under fedearal investigation because a clerk accidently copied some kind of billing forms of twice. Because it had to do with medicaid in MA during the height of some other investigations it was crazy. Agents stormed the clinic, took computers by force etc. My husbands job was to clean up future paperwork so they could prove they were doing nothing wrong. It was NUTS! I cant imagine dealing with that and Fibro:eek:

How are you feeling now? I know you were concerned about the cruise in May/June. Do you still worry you wont make it? I really hope we can meet for coffee or drinks.:)

Do you think you qualify for disability? Is it time to try that route? The pressures in NE are so much greater than here in PA. I know how hard it will be for you to find somthing that can accomodate your changing needs.

Know you are in my thoughts..

Sending pain free vibes:goodvibes and pixie dust to allpixiedust:

[mommasita]

Thank you for the warm welcomes, and sharing your stories :grouphug:

My insurance and work have been fantastic. Honestly I think it is me who slightly pushes it, and they naturally want to be 100% certain that it is the right move. I have to learn to accept it. I work for a major airline, and just miss it so much. I honestly love it, and probably that does not help.

My family IMHO is so so. DH is a fabulous provider, and works a lot. It isn't often, but sometimes I get the "well somebody has to work", and "if you worked you might understand" :mad:. He quickly apologizes, but to me what's done is done. I am still on insurance, and getting the same amount of $ almost to the penny as when I was working. DD who is almost 13 is good, but lately I have hear a bit of "what exactly do YOU DO during the day", and "all my friends Mothers work"... Well what do I do????? I clean, wash, chauffeur, cook, and basically have it so NOBODY has a thing to do when they get home. I think I am hormonal lately, so that doesn't help. I hate winter, and it just gives me the blahs.:upsidedow

I am looking forward to Wednesday to get a clearer picture... I hope everyone is doing somewhat well. Gentle hugs :grouphug:

[tiggspring]

Thank you for the warm welcomes, and sharing your stories :grouphug:

My insurance and work have been fantastic. Honestly I think it is me who slightly pushes it, and they naturally want to be 100% certain that it is the right move. I have to learn to accept it. I work for a major airline, and just miss it so much. I honestly love it, and probably that does not help.

My family IMHO is so so. DH is a fabulous provider, and works a lot. It isn't often, but sometimes I get the "well somebody has to work", and "if you worked you might understand" :mad:. He quickly apologizes, but to me what's done is done. I am still on insurance, and getting the same amount of $ almost to the penny as when I was working. DD who is almost 13 is good, but lately I have hear a bit of "what exactly do YOU DO during the day", and "all my friends Mothers work"... Well what do I do????? I clean, wash, chauffeur, cook, and basically have it so NOBODY has a thing to do when they get home. I think I am hormonal lately, so that doesn't help. I hate winter, and it just gives me the blahs.:upsidedow

I am looking forward to Wednesday to get a clearer picture... I hope everyone is doing somewhat well. Gentle hugs :grouphug:


Good luck Wed:hug:

I think what your going through has alot to do with our value as stay at home moms more than FMS. My kids and hubby understand the fibro. My kids remember the times when they were toddlers and the would grab me from behind and I'd drop to the floor in pain or the days I would lock us in a room because I could bearly move and I could keep a better eye on them in my bedroom where they camped out and watched tv and I lay close to comatosed. They really do understand I'm sick. DH says if I were ever to get better he would want me to stay home anyway because I've earned the right to fully enjoy my life and do what ever I want:love:

Despite that I still get "so snd sos mom does......" and "why cant you...." but the facts are if I was well they would get even less of my time. Granted I have to plot and plan to get things done but for all the big stuff I'm there. For all the days they get off the bus or home from work miserable about something I'm there. My kids are required to do chores...mostly laundry and dishes but even that doesnt get them to completely understand how much time just packing lunches and getting the kids off to school takes. My DH worked from home for several years so he knows how time flies when trying to run a house. We have explained that they would have chores even if I was well. That a family is a team and that means everyone pitches in and besides they need to know how to cook, clean and do laundry before they go to college. So its a win win. I get help getting things done that are difficult for me and they get a mom that cant get them where they need to go and they become fully functioning adults....No guilt here .

The main issue with my DH is during transitions. I go through periods where my memory is bad then I go through periods where it is horendious:lmao: I am right upfrount when my memory is bad and yet DH gets quite mad at me at times for forgetting:confused3 I have to remind him of the cognitive testing I had to prove my memory is impaired. Then when my memory comes back he will blam my fibro for all sorts of things HE FORGOT which get me really mad:mad: I then remind him hey my mind is fine right now so dont blame me! I know when I forget because there is a "black hole" in my mind. Its just blank no ambuguity there:rotfl2:

Anyway after three years it is likely this is as good as its going to get unless some treatment comes along. It was at this point in my illness I had to find my worthyness without a job and let go of the guilt. FMS is not our fault.

Hang in there it does get better:hug::hug:

[mommasita]

Thank You, I think you are spot on..:hug:

I do have little chores they all do on the weekends, because I find quite honestly with school, sports, work, etc, it can already be a full day. DH does different shifts at the airport including some (if not most) weekends.


My memory is awful..I have lists for my lists :rotfl:.. What I lost prior to my surgeries will never be regained, and like you I have some good days and some where I forget EVERYTHING... The Dr said the progression should have halted until the Chiari grows back, but what is gone is gone.

As usual I sit awake the night before my appointment. One thing I am glad is that I am in pain. IT sounds crazy, but often I go to the Dr feeling good, so I don't really have much to add, but when I am like this today, I surely will be good to talk tomorrow..

Thanks again everyone.:grouphug:

[tiggspring]

Thank You, I think you are spot on..:hug:

I do have little chores they all do on the weekends, because I find quite honestly with school, sports, work, etc, it can already be a full day. DH does different shifts at the airport including some (if not most) weekends.


My memory is awful..I have lists for my lists :rotfl:.. What I lost prior to my surgeries will never be regained, and like you I have some good days and some where I forget EVERYTHING... The Dr said the progression should have halted until the Chiari grows back, but what is gone is gone.

As usual I sit awake the night before my appointment. One thing I am glad is that I am in pain. IT sounds crazy, but often I go to the Dr feeling good, so I don't really have much to add, but when I am like this today, I surely will be good to talk tomorrow..

Thanks again everyone.:grouphug:

How was your appointment?

I had to laugh when you said you were happy to be in pain. I too always seem a bit better when I go into the Dr office. I always seem to suck it up when I'm around others. Drives my DH crazy :rotfl:I guess I dont want to look like I'm complaining just explaining this bizzare disease. My last visit I had a major adreniline rush. Hands went stone cold, BP way up yet no anxiety. Was so glad he could see that and that it can be triggered by something as simple as a pleasent conversation. By end of visit hands still cold and BP normal.:confused3 He could see for himself I wasnt anxious which I was sooo greatful for. Sick of being told I might be anxious or depressed when I obviously am not.

Sending pain free vibes:goodvibes and pixiew dust to allpixiedust:

[mommasita]

Sorry for the delay, and THANK YOU for asking.:grouphug: I was on a little pity party yesterday, and held back from family as they aren't getting any younger (parents), and only DH knows really what is going on.

First off was the results of my MRI.. My 2 cysts have turned into Arachnoid Cysts, not exactly a tumor, but I did have them biopsed a few weeks ago. and I thought that was gut wrenching, but the Dr said those are the least of his worries, they don't seem to be a concern. They are benign.. I guess just the word tumor made me :confused:.. He then pauses to say that in addition to the brain malformation I was born with, I have a sever spinal one. Spinal Stenosis, but it is cervical, and so surgery will be necessary. It won't be right away, so I have time to adjust to this new diagnosis. I remember 1/2 of what he said about it to be honest, I think I was floored. He kept giving me how advanced it is, and it is not giving much room....They removed C1 and 1/2 of C2 during surgery, and it seems I was born without C3 and 4, so not too many left, and my neck is spinning on very little.

He did agree to a "trial" back to work. I only work 3 days per week, but will need a few months of rehabilitation, to be able to fulfill my 8 hour day. This will probably be at the beginning of April. My insurance did ask me to bring a copy of the MRI home, but he was insistent that he will fax it to them. He did not want me to see it because he knows I will read tumor and cause myself to worry more. In the end I think he was right..I tend to Google a LITTLE too much..:laughing:

I did burst out in a few tears, and he told me I had every right to cry. At 42 I now have more problems to go with what I had. I don't feel sorry for myself any longer. I try never to ask why me, and I know so many have it worse. I just want to feel semi-normal.. I wanted to have just what I have and nothing else, but we must live with the hand we are dealt..


Oh and I am trying Cymbalta, and OOOH is it hard on the stomach..I am only on my 2nd night of it, and so I will give it a chance. I forget to eat with it, only realizing at 8 tonight, that I hadn't eaten all day, so maybe that doesn't help.


Thank you again, and how is everyone else?:flower3::grouphug:

[tiggspring]

Sorry for the delay, and THANK YOU for asking.:grouphug: I was on a little pity party yesterday, and held back from family as they aren't getting any younger (parents), and only DH knows really what is going on.

First off was the results of my MRI.. My 2 cysts have turned into Arachnoid Cysts, not exactly a tumor, but I did have them biopsed a few weeks ago. and I thought that was gut wrenching, but the Dr said those are the least of his worries, they don't seem to be a concern. They are benign.. I guess just the word tumor made me :confused:.. He then pauses to say that in addition to the brain malformation I was born with, I have a sever spinal one. Spinal Stenosis, but it is cervical, and so surgery will be necessary. It won't be right away, so I have time to adjust to this new diagnosis. I remember 1/2 of what he said about it to be honest, I think I was floored. He kept giving me how advanced it is, and it is not giving much room....They removed C1 and 1/2 of C2 during surgery, and it seems I was born without C3 and 4, so not too many left, and my neck is spinning on very little.

He did agree to a "trial" back to work. I only work 3 days per week, but will need a few months of rehabilitation, to be able to fulfill my 8 hour day. This will probably be at the beginning of April. My insurance did ask me to bring a copy of the MRI home, but he was insistent that he will fax it to them. He did not want me to see it because he knows I will read tumor and cause myself to worry more. In the end I think he was right..I tend to Google a LITTLE too much..:laughing:

I did burst out in a few tears, and he told me I had every right to cry. At 42 I now have more problems to go with what I had. I don't feel sorry for myself any longer. I try never to ask why me, and I know so many have it worse. I just want to feel semi-normal.. I wanted to have just what I have and nothing else, but we must live with the hand we are dealt..


Oh and I am trying Cymbalta, and OOOH is it hard on the stomach..I am only on my 2nd night of it, and so I will give it a chance. I forget to eat with it, only realizing at 8 tonight, that I hadn't eaten all day, so maybe that doesn't help.


Thank you again, and how is everyone else?:flower3::grouphug:

I'm so sorry you had such a hard day!:hug:

There may be a tiny silver lining in all those clouds. Did he mention that cervicle stanosis can cause symptoms similer to FMS/Chronic fatigue? I seem to remember this being a rule out for me many years ago since my symptoms started with and injury to my shoulder and neck c1/c2. Maybe if you get this surgery FMS will improve or dissapear. It wont make up for all the rest of it but it would be one less thing off your plate.:hug:

Hang in there!

[mommasita]

Thank You.

He said SO much, that I honestly don't remember 1/2:sad2:

He did say that I have a few strikes. The Fibro, the Sjrogens, the Chiari that damaged me since birth until the surgery at 41, I also have pernicious anemia. All of these have the same symptoms. The Chiari was halted by surgery, so no further progression until it grows back, but the damage that was done is done..

I don't know the exact score, but I failed the pressure point for sure a few years ago.

One thing that has haunted me before, but more so now, is that PLEASE PLEASE GOD don't let any or both of my children inherit any of it.:guilty:

[tiggspring]

Thank You.

He said SO much, that I honestly don't remember 1/2:sad2:

He did say that I have a few strikes. The Fibro, the Sjrogens, the Chiari that damaged me since birth until the surgery at 41, I also have pernicious anemia. All of these have the same symptoms. The Chiari was halted by surgery, so no further progression until it grows back, but the damage that was done is done..

I don't know the exact score, but I failed the pressure point for sure a few years ago.

One thing that has haunted me before, but more so now, is that PLEASE PLEASE GOD don't let any or both of my children inherit any of it.:guilty:

Let me ease your gult a little bit. I spent two years researching fms/cfids for genetic links. At that time there were none. There has been some evidence that links fms to a virus. Xmrv does not Look like THE virus at this time. Now there is some evidence that genetics may play a roll but only when several factors are in play. Generaly fms sufferers have had some sort of mental or physical stress ie flu combined with an injury with a family member having arthritis or fms. My grandfather lived through the depression when he df died of rabbies leaving him head of the family. He then hurt his right shoulder playing semi pro football in 1930's. I survived a difficult childhood followed by my hs sweetheart getting cancer making me a caregiver then a widow at 24. I was involved in a car accident having a neck injury that healed only to have neck reinjured severly during attack at work.

So if it was genetic your kids would not only need the gene and the trama and/or contagin. Odds???? Not likely. ;)

[SeaSpray]

Hi everyone.... just checking in... :surfweb:

I've been in a fair bit of pain lately; muscles, joints, you name it. Also I've been much more fatigued than usual. Par for the course though, right?

Sherrie and tigg, you've both been through so much. :hug:

tigg: I was just reading back a couple of pages; do we have plans to meet for coffee?? I apologise that I don't remember. :headache:

I will definitely make it ON to the cruise ship, but not sure how well I will be able to get around. :sad2: I have to find out if they have any wheelchairs available to use on the ship. I can't even walk around a small grocery store unless I'm having a really good day, I'm not anticipating being able to walk a lot while on vacation, although I try to be optimistic.

[tiggspring]

Hi everyone.... just checking in... :surfweb:

I've been in a fair bit of pain lately; muscles, joints, you name it. Also I've been much more fatigued than usual. Par for the course though, right?

Sherrie and tigg, you've both been through so much. :hug:

tigg: I was just reading back a couple of pages; do we have plans to meet for coffee?? I apologise that I don't remember. :headache:

I will definitely make it ON to the cruise ship, but not sure how well I will be able to get around. :sad2: I have to find out if they have any wheelchairs available to use on the ship. I can't even walk around a small grocery store unless I'm having a really good day, I'm not anticipating being able to walk a lot while on vacation, although I try to be optimistic.

Seaspray so sorry you are having so much trouble!!!:grouphug:

About a year ago when we both realized we had booked this cruise we had talked about coffee or DRINKS:drinking1. It was a long time ago one of us was bound to forget:rotfl2: Anway I would love to meet but we dont have to. I dont want any of us to feel we have to do this. Its vacation and we both know that hanging with others not intimately used to our quirks can be quite exhasting. My Dad visits and is very careful wih me but somehow he misses little signal I dont even know I send out but DH and kids notice. I always crash after he visits and he never stays for more than two days:sad2:

What I'm saying is no pressure. We meet ok, not ok and make plans to meet couple times than cancel for any reason even just need alone time with hubby its ok. We can always share back here in late June or July:thumbsup2

[tiggspring]

Seaspray so sorry you are having so much trouble!!!:grouphug:

About a year ago when we both realized we had booked this cruise we had talked about coffee or DRINKS:drinking1. It was a long time ago one of us was bound to forget:rotfl2: Anway I would love to meet but we dont have to. I dont want any of us to feel we have to do this. Its vacation and we both know that hanging with others not intimately used to our quirks can be quite exhasting. My Dad visits and is very careful wih me but somehow he misses little signal I dont even know I send out but DH and kids notice. I always crash after he visits and he never stays for more than two days:sad2:

What I'm saying is no pressure. We meet ok, not ok and make plans to meet couple times than cancel for any reason even just need alone time with hubby its ok. We can always share back here in late June or July:thumbsup2

To be honest I was alittle worried about this meetNgreet because sometimes I look reallly good but inside I know I can't handle even a simple multi person conversation because my brain is a scrable inside. We had a poster here a long time ago who took these things personal something the rest of us here have worked hard not to do since fibro makes our brains so forgetful etc. :headache:This is our safe place. Didnt want to plan time together, cancel then meet up and have you think I just dumped you because you saw me around the ship having fun with DH. Does that work for you? Make our drink plans TBA?;)

[SeaSpray]

Seaspray so sorry you are having so much trouble!!!:grouphug:

About a year ago when we both realized we had booked this cruise we had talked about coffee or DRINKS:drinking1. It was a long time ago one of us was bound to forget:rotfl2: Anway I would love to meet but we dont have to. I dont want any of us to feel we have to do this. Its vacation and we both know that hanging with others not intimately used to our quirks can be quite exhasting. My Dad visits and is very careful wih me but somehow he misses little signal I dont even know I send out but DH and kids notice. I always crash after he visits and he never stays for more than two days:sad2:

What I'm saying is no pressure. We meet ok, not ok and make plans to meet couple times than cancel for any reason even just need alone time with hubby its ok. We can always share back here in late June or July:thumbsup2

To be honest I was alittle worried about this meetNgreet because sometimes I look reallly good but inside I know I can't handle even a simple multi person conversation because my brain is a scrable inside. We had a poster here a long time ago who took these things personal something the rest of us here have worked hard not to do since fibro makes our brains so forgetful etc. :headache:This is our safe place. Didnt want to plan time together, cancel then meet up and have you think I just dumped you because you saw me around the ship having fun with DH. Does that work for you? Make our drink plans TBA?;)

Actually I would love to meet you for coffee or drinks, and I thought maybe we lived near each other or something! But it looks like you're going on the Dream and I'm going on the Magic. I'm on the first New York City/Bahamas cruise.

[tiggspring]

Actually I would love to meet you for coffee or drinks, and I thought maybe we lived near each other or something! But it looks like you're going on the Dream and I'm going on the Magic. I'm on the first New York City/Bahamas cruise.

:lmao::rotfl::lmao:

Ok Disney officially has too many ships going to the Bahamas for this fibro brain to handle:rotfl2:Told you my brain might not be ready for a multiperson conversation:laughing:

I thought you had an add on in NYC then cruise on Dream since the dates were the same. Maybe we can wave at each other as our ships pass in the night;)

I was really looking forward to hangin with somone from NE for awhile. I LOVE PA but miss all of you straight talking Yankees. People here dont always say whats on there minds. Also it seems like I chat with so many people here I should at least meet one! Well enjoy the trip leaving from NYC certainly will be easier than going all the way down to Cape Canaveral.

[Earstou]

Mommasita, Chiari also can cause fibro symptoms.

[mommasita]

Tigg :hug: I'm sorry for everything you've gone through, and I thank you for all your kind words.

Sea-Spray :hug: to you too. I'm sorry you are in so much pain. The ships do have wheelchairs. My memory is poor :laughing:, but if I recall correctly, there is a limited number. You may want to call ahead of time to confirm this in case..I had done this years ago but my mother canceled in the end... Have you been on the Dream? We went in October and LOVED it. It was short as we are used to the Magic, but it is a GORGEOUS SHIP.. I have many pictures on FB if you are interested let me know.

Tigg, not sure if you have been on the Magic, but that is my :love:ship...I was looking into the prices for the summer, but find them quite high.:scared1:. I will hold out for an interline rate.

Earstou: Thank you, that was also explained. So many things can and do mimic each other huh.

[tiggspring]

Tigg :hug: I'm sorry for everything you've gone through, and I thank you for all your kind words.

Sea-Spray :hug: to you too. I'm sorry you are in so much pain. The ships do have wheelchairs. My memory is poor :laughing:, but if I recall correctly, there is a limited number. You may want to call ahead of time to confirm this in case..I had done this years ago but my mother canceled in the end... Have you been on the Dream? We went in October and LOVED it. It was short as we are used to the Magic, but it is a GORGEOUS SHIP.. I have many pictures on FB if you are interested let me know.

Tigg, not sure if you have been on the Magic, but that is my :love:ship...I was looking into the prices for the summer, but find them quite high.:scared1:. I will hold out for an interline rate.

Earstou: Thank you, that was also explained. So many things can and do mimic each other huh.


Thanks to you and eveyone for the kind thoughts. I know my life looks really rough on paper. One on my friends once said if I didnt have bad luck I'd have none at all.:laughing:

Really I dont I dont feel that way much. I look at all of my friends and not one has a whole/loving relationship or ever has had one. :sad2:. My DH and I have been through really rough times and have had some periods where we didnt like each other much;) but the love, commitment, partnership were always there. We are a team. What is more important than that? I've been blessed with that kind of love not once but twice. Add to that three kids that are healthy and smart enough to drive me completely insane and you have a perfect life:rotfl2: The rough times and Fibro have been major disruptive forces in my life but love and family is what defines me:love:I am soooo blessed.:goodvibes

Momma I cant wait to see your pix! Any tips before our trip? I really havent started planning:scared1: I know what you mean about dcl prices:scared1: We looked two years back and it was going to cost us almost $9000 for a veranda room that fits five:scared1::scared1: booking 9 months out was not enough. Then one day I asked when I should book to get a good deal for 2012 and was told NOW! It was more than18 months away! SO I looked and prices were little more than half what they had been by the time I had our deposit they had gone up another 1000:sad2: Thats crazy having to book nearly two years out or pay almost $2000 a day. We will be paying on gift cards with double fuel perks so I will get 600 in free gas but still this might be a once in a lifetime family gig unless my husbands business keeps having great years. Heres hoping:goodvibes

Fibro wise I've been in a very weird place that I think I just figured out with DH yesterday. On the one hand I losing weight:thumbsup2 Pain is there but for the first time in 7 years I'm able to exersize and have been doing so 3-5 days a week:cool1:. I feel stonger than since my pregnacy. BUT NOTHING IS GETTING DONE:mad: Part of it is when I exersise I'm quite tired but it not the pass out cant move tired I have in fatigue mode. I also get exersize induced headaches /migraines. I am still having bouts in the am when I fall asleep sitting up after kids leave but that doesent explain why nothing gets done in afternoon. :confused3I couldnt figure out why until my converstion with Seaspray. I'm having great difficulty keeping complete thoughts in my head for any period on time and oftern look like this:confused: Hence I dont keep a running list of what needs to be done in my head I often find myself starting one task and moving on to others and forget to finish thme. When kids are all making noise all bets are off any thought in my head is gone. If this lasts awhile I'll have to add a new mode to the pain mode/fatigue mode. Think I'll call it my dazed and confused mode;)

Sending pain free vibes:goodvibesand pixie dust to allpixiedust:

[SeaSpray]

:lmao::rotfl::lmao:

Ok Disney officially has too many ships going to the Bahamas for this fibro brain to handle:rotfl2:Told you my brain might not be ready for a multiperson conversation:laughing:

I thought you had an add on in NYC then cruise on Dream since the dates were the same. Maybe we can wave at each other as our ships pass in the night;)

I was really looking forward to hangin with somone from NE for awhile. I LOVE PA but miss all of you straight talking Yankees. People here dont always say whats on there minds. Also it seems like I chat with so many people here I should at least meet one! Well enjoy the trip leaving from NYC certainly will be easier than going all the way down to Cape Canaveral.

That would've been great to be on the same cruise, Tigg. :hug: We'll definitely have to wave as our ships pass in the night. :laughing:

Tigg :hug: I'm sorry for everything you've gone through, and I thank you for all your kind words.

Sea-Spray :hug: to you too. I'm sorry you are in so much pain. The ships do have wheelchairs. My memory is poor :laughing:, but if I recall correctly, there is a limited number. You may want to call ahead of time to confirm this in case..I had done this years ago but my mother canceled in the end... Have you been on the Dream? We went in October and LOVED it. It was short as we are used to the Magic, but it is a GORGEOUS SHIP.. I have many pictures on FB if you are interested let me know.

Tigg, not sure if you have been on the Magic, but that is my :love:ship...I was looking into the prices for the summer, but find them quite high.:scared1:. I will hold out for an interline rate.

Earstou: Thank you, that was also explained. So many things can and do mimic each other huh.

Thanks for the info on the wheelchairs onboard, that is good to know. I am really, really hoping that I have a "good week" during the cruise and won't need it, but even with fibromyalgia aside, I still have RA and plantar fasciitis to deal with. Oh well, I'm optimistic, it's all going to be great. :upsidedow LOL

I would definitely love to see your cruise pics!! I have our cruise pics on my web site, the link is below in my signature. :) This will be our third time on the Magic and I really can't wait. :banana:





Well tonight's dinner is being changed due to pain. :headache: I was going to make roasted chicken and potatoes, but I have a muscle pain in my right shoulder blade so I'm going to let everyone know that we'll be having frozen pizza tonight. I started buying organic frozen foods because that way I feel slightly less guilty when I don't make a "fresh meal". They are individual pizzas, so everyone can make their own when they feel like it.

I think my shoulder might be hurting today because I did over 2 hours of driving yesterday. I went to Rhode Island to pick up my DS23 who wanted to come home for a few days to visit. His car is off the road, so he needed a ride up, and he'll need a ride home eventually, too. I told him that I'll take him home when I feel up to it, whether that be 2 days or 2 weeks. LOL He's fine with that. lol He lives with 2 other room mates (he has his own bedroom) and I know that he likes the break once in a while. He doesn't work (he's on disability) so it's not like he has to get back to a job or anything.

Well that's enough of my ramblings. lol I hope everyone is feeling OK today.
:grouphug: Hugs and Pixie Dust! :tinker: ~*~*~*~*~*~*~*~

[tiggspring]

That would've been great to be on the same cruise, Tigg. :hug: We'll definitely have to wave as our ships pass in the night. :laughing:



Thanks for the info on the wheelchairs onboard, that is good to know. I am really, really hoping that I have a "good week" during the cruise and won't need it, but even with fibromyalgia aside, I still have RA and plantar fasciitis to deal with. Oh well, I'm optimistic, it's all going to be great. :upsidedow LOL

I would definitely love to see your cruise pics!! I have our cruise pics on my web site, the link is below in my signature. :) This will be our third time on the Magic and I really can't wait. :banana:





Well tonight's dinner is being changed due to pain. :headache: I was going to make roasted chicken and potatoes, but I have a muscle pain in my right shoulder blade so I'm going to let everyone know that we'll be having frozen pizza tonight. I started buying organic frozen foods because that way I feel slightly less guilty when I don't make a "fresh meal". They are individual pizzas, so everyone can make their own when they feel like it.

I think my shoulder might be hurting today because I did over 2 hours of driving yesterday. I went to Rhode Island to pick up my DS23 who wanted to come home for a few days to visit. His car is off the road, so he needed a ride up, and he'll need a ride home eventually, too. I told him that I'll take him home when I feel up to it, whether that be 2 days or 2 weeks. LOL He's fine with that. lol He lives with 2 other room mates (he has his own bedroom) and I know that he likes the break once in a while. He doesn't work (he's on disability) so it's not like he has to get back to a job or anything.

Well that's enough of my ramblings. lol I hope everyone is feeling OK today.
:grouphug: Hugs and Pixie Dust! :tinker: ~*~*~*~*~*~*~*~

Yep that would do it for me! I have a rule not to drive more than 20 minutes away because my body just cant handle it. Either it triggers pain or migraines.:headache:

If you dont mind me asking does DS go to URI? I loved living in matunick and going to URI. Eventhough I worked full time while there, I have such found memories of those years. Unfortunately I had to transfer to RIC when DH1 got sick. For some reason I still feel like a uri grad:confused3

Does your DS have Fibro too? Maybe you mentioned his disability before and I missed it. As hard as it is for me to deal with my illness it was much harder to watch DD1 when she had health issues and we knew once she was old enough for surgery (4) she would be fine. You must be proud and worried all at the same time:hug:

Feel better soon!

[tiggspring]

Tigg :hug: I'm sorry for everything you've gone through, and I thank you for all your kind words.

Sea-Spray :hug: to you too. I'm sorry you are in so much pain. The ships do have wheelchairs. My memory is poor :laughing:, but if I recall correctly, there is a limited number. You may want to call ahead of time to confirm this in case..I had done this years ago but my mother canceled in the end... Have you been on the Dream? We went in October and LOVED it. It was short as we are used to the Magic, but it is a GORGEOUS SHIP.. I have many pictures on FB if you are interested let me know.

Tigg, not sure if you have been on the Magic, but that is my :love:ship...I was looking into the prices for the summer, but find them quite high.:scared1:. I will hold out for an interline rate.

Earstou: Thank you, that was also explained. So many things can and do mimic each other huh.


Ok what is an Interline rate?

[mommasita]

Ok what is an Interline rate?

An Airline employee rate. Both DH and myself are entitled as we both work for major airlines. Sometimes the rates are fantastic, but they are almost ALWAYS last last last minute. We pack and go :lmao: Literally... The fun part is we can book up to 2 rooms, and often our friends come along. If not, we take the 2nd room for the kids ;)

I had a small car accident yesterday. Stopped at a crosswalk (AS I SHOULD BE) allowing a young child to cross, when BAM I got hit from behind, I had to swerve to the right to avoid hitting this child, and went straight into the sidewalk. UGHHH....DH was home thankfully, and came out while the cops were there. Car-undriveable. Thankfully my BIL is a mechanic, so I followed DH there to leave it, and then finally picked up DD.

I thought nothing of it, and then tried to get out of bed this morning :sad1::sad1:.. Then it suddenly hit me, oh yeah I had an accident. I have been hurting MORE SO than the norm today, but have taken it pretty easy. Kids helped me do supper, like lifting pots and stuff, as DH was still at work.
Here is hoping for a better day tomorrow. I have lots to do. DS keeps FORGETTING his school shirts, and is done to 1 . I felt awful, but took 50$ from him to purchase 2 new ones. Hopefully this will help his MEMORY ;). I just can't keep up. His growth is one thing, but the constantly forgetting, nope.. THen I think I will get the kids something small candywise. I also have to pick up a gift card for a party DD is going to this weekend. I was supposed to do most of this today, but it was a whipe-out. I drove DD to school, and just lay flat on my back.

Well, always rambling I feel. Hoping that FRiday night DH and I may go out to dinner ALONE. The last time was for our Anniversay last JUNE, but since DS was home and he loves where we go, we brought him. I will feed them a nice dinner, and they can survive the 2 hours.

Making Heart shaped Pancakes for breakfast.

HOw is everyone doing? I honestly read it all, but forget :confused:

[tiggspring]

An Airline employee rate. Both DH and myself are entitled as we both work for major airlines. Sometimes the rates are fantastic, but they are almost ALWAYS last last last minute. We pack and go :lmao: Literally... The fun part is we can book up to 2 rooms, and often our friends come along. If not, we take the 2nd room for the kids ;)

I had a small car accident yesterday. Stopped at a crosswalk (AS I SHOULD BE) allowing a young child to cross, when BAM I got hit from behind, I had to swerve to the right to avoid hitting this child, and went straight into the sidewalk. UGHHH....DH was home thankfully, and came out while the cops were there. Car-undriveable. Thankfully my BIL is a mechanic, so I followed DH there to leave it, and then finally picked up DD.

I thought nothing of it, and then tried to get out of bed this morning :sad1::sad1:.. Then it suddenly hit me, oh yeah I had an accident. I have been hurting MORE SO than the norm today, but have taken it pretty easy. Kids helped me do supper, like lifting pots and stuff, as DH was still at work.
Here is hoping for a better day tomorrow. I have lots to do. DS keeps FORGETTING his school shirts, and is done to 1 . I felt awful, but took 50$ from him to purchase 2 new ones. Hopefully this will help his MEMORY ;). I just can't keep up. His growth is one thing, but the constantly forgetting, nope.. THen I think I will get the kids something small candywise. I also have to pick up a gift card for a party DD is going to this weekend. I was supposed to do most of this today, but it was a whipe-out. I drove DD to school, and just lay flat on my back.

Well, always rambling I feel. Hoping that FRiday night DH and I may go out to dinner ALONE. The last time was for our Anniversay last JUNE, but since DS was home and he loves where we go, we brought him. I will feed them a nice dinner, and they can survive the 2 hours.

Making Heart shaped Pancakes for breakfast.

HOw is everyone doing? I honestly read it all, but forget :confused:

OMG are you feeling any better?

You obviously forgot to do the Rhode Island roll. Did you forget that people in cross walks are worth double points:rotfl2: Seriously people here in W PA just dont believe me when I tell them in NE you dont stop at stop signs (or cross walks) you roll though them. He we have a 5 way stop and everyone waits and takes turns making sure its first come. I always laugh and think these poor people would never survive in Providence, Boston or DC...forgetabout NYC!:lmao:

Glad I'm not the only one that left the valintines til today. DH and I havnet had a date for ourselves since WDW 2010. We have snuck in some breakfasts while kids in school but an old fashoned date? We average about one a year at best. We just decided this year to skip Valentines day. With his phd/work and my being overwhelmed with kids we could do it but we wouldnt enjoy it so why put out the cash? Saving all our loving for the Cruise:lovestruc. In a way its nice to be in a place where these days do not mean as much as they used to. We try to take some time everyday we are together just for the two of us. Its usually interupted with my DH yelling something like "go back to bed I want to spend time with my WIFE!" :love: Isnt that romantic:rotfl2:

[mommasita]

:rotfl2::rotfl2: That is cute!

Yes, I am a little stiff, but better... Thank you.

I went out today, but did 1/2 of what I should have, there is always tomorrow :lmao:. Instead of buying boxes of chocolate that somehow end up 1/2 eaten, I purchased 4 cupcakes. 2 Red Velvet and 2 Chocolate. They have lovely hearts on top...

I know what you mean about the date department. We go in June (anniversary) and maybe sometime around now. In June my daughter was out and I did not have the heart to not bring my son, so we went the 3 of us. Honestly I don't mind, but he OUTEATS me, and we only go to the Keg rarely as it is pricey. I just feel awful because he loves it so much. DH called earlier from work and said this time let us just go the 2 of us. I dunno still, although it's over a year or more, I just don't mind the kids coming, they are not babies...

HOw is everyone feeling?

[EDuke98080]

Hi All!

Haven't had a chance to read and catch up but I hope all are well. I have had a rough time since November, keep hoping for some improvement and less exhaustion. At least out winter has been mild and tolerable.

Hope to catch up soon!

Erika

[tiggspring]

Hi All!

Haven't had a chance to read and catch up but I hope all are well. I have had a rough time since November, keep hoping for some improvement and less exhaustion. At least out winter has been mild and tolerable.

Hope to catch up soon!

Erika

Hang in there! :hug: Hope you feel better soon. Looking forward to your update.

[tiggspring]

:rotfl2::rotfl2: That is cute!

Yes, I am a little stiff, but better... Thank you.

I went out today, but did 1/2 of what I should have, there is always tomorrow :lmao:. Instead of buying boxes of chocolate that somehow end up 1/2 eaten, I purchased 4 cupcakes. 2 Red Velvet and 2 Chocolate. They have lovely hearts on top...

I know what you mean about the date department. We go in June (anniversary) and maybe sometime around now. In June my daughter was out and I did not have the heart to not bring my son, so we went the 3 of us. Honestly I don't mind, but he OUTEATS me, and we only go to the Keg rarely as it is pricey. I just feel awful because he loves it so much. DH called earlier from work and said this time let us just go the 2 of us. I dunno still, although it's over a year or more, I just don't mind the kids coming, they are not babies...

HOw is everyone feeling?

OK I owe you an apology.:guilty: I mixed up your car accident with Seaspray's driving around RI and MA and and threw in some commentary about NE drivers and the Rhode Island roll. Obviously you dont do the roll in CANADA....DUH. Wow my brain really is missing the details lately.


Hope you both are feeling better. :hug:

[mommasita]

OK I owe you an apology.:guilty: I mixed up your car accident with Seaspray's driving around RI and MA and and threw in some commentary about NE drivers and the Rhode Island roll. Obviously you dont do the roll in CANADA....DUH. Wow my brain really is missing the details lately.


Hope you both are feeling better. :hug:

Oh that is ok, I mix up everything..:)

So, how is everyone?

. I finally decided to suck it up and get washed this weekend. I got a letter Thursday stating my job is terminated, they are letting me go, and I cried for a few days straight, and have now decided I am going to fight this...I know I can't afford the $$ for a lawyer, so for now I have some paperwork from the Canadian LAbour Board to fill out, but first I am waiting on my insurance to get back to me, as they were :scared1: about it. They had no idea. I also called my Dr, who is out of town.:upsidedow:upsidedow

[tiggspring]

Oh that is ok, I mix up everything..:)

So, how is everyone?

. I finally decided to suck it up and get washed this weekend. I got a letter Thursday stating my job is terminated, they are letting me go, and I cried for a few days straight, and have now decided I am going to fight this...I know I can't afford the $$ for a lawyer, so for now I have some paperwork from the Canadian LAbour Board to fill out, but first I am waiting on my insurance to get back to me, as they were :scared1: about it. They had no idea. I also called my Dr, who is out of town.:upsidedow:upsidedow

Wow sounds like you had a realy bad day:hug: Do you spacific laws about how long they have to wait for you to rehabilitate in Canada? Down here we have the Americans with disabilities act but it is tough to keep a job if they dont want you. My boss was new and setting me up to be fired when I went out on disability leave. I actualy had a note from her saying she was concerned some of my work wasnt performed on a certain date and that I needed to prioritize my time better. I had a patient intake that day that was canceled because I was in the ER. I dont know about you but I dont tent to schedule ER visits into my schedule:rotfl2: Dr put me out next day.

One thing you need to consider before you fight is wether you can win and is it worth the stress. As you know stress is really bad for us. If financially insuarance will kick in is it worth it? Thats alot of energy lost from you and your family. Getting Social security took me 2years and dam neared killed me. I had no choice as we had no long term diasability insurance and thus had no income for nearly two years. Thankfully we didnt have kids yet but boy was it stressful.

I totally get not wanting to leave your dream job. I still miss the excitement/fufillment my job gave me and it has been 18yrs. I still feel myself "light up" inside when I talk about those days.

Hang in there:grouphug:

[SeaSpray]

Hi everyone:

I'm not feeling great lately at all. Physically and mentally/emotionally. :( I don't know why, but I'm getting anxiety attacks again out of the blue. Well, I shouldn't say that I don't know why. I do know why, but none of it is anything new, so I'm not sure why I'm getting anxiety attacks over them. Blah. I'll be seeing my psychologist tomorrow afternoon. I'm not feeling like I want to leave the house lately. Good grief, that's all I need - agoraphobia. :rolleyes:

I know that I'll feel better soon, eventually.


Sherrie, I'm sorry about your job and how upset you are. :hug:

Erika, I see you are in MA also. Yes, a great "winter" this year. That's one good thing anyway!

tigg, those cupcakes sound good. :)


I'm sorry to not comment to everyone specifically, but my brains are scrambled eggs right now. :headache:

[tiggspring]

Hi everyone:

I'm not feeling great lately at all. Physically and mentally/emotionally. :( I don't know why, but I'm getting anxiety attacks again out of the blue. Well, I shouldn't say that I don't know why. I do know why, but none of it is anything new, so I'm not sure why I'm getting anxiety attacks over them. Blah. I'll be seeing my psychologist tomorrow afternoon. I'm not feeling like I want to leave the house lately. Good grief, that's all I need - agoraphobia. :rolleyes:

I know that I'll feel better soon, eventually.


Sherrie, I'm sorry about your job and how upset you are. :hug:

Erika, I see you are in MA also. Yes, a great "winter" this year. That's one good thing anyway!

tigg, those cupcakes sound good. :)


I'm sorry to not comment to everyone specifically, but my brains are scrambled eggs right now. :headache:

I'm sorry you are feeling so anxious!:hug:

I dont know how old you are but I have noticed that since I'm in perimenopause that certains weeks I'm much more irritated combined with FMS increases and intestinal issues:headache:. I have never had pms even a little. Have you notices any cycles with your anxiety? It might be hormonallly triggered.

I have scrambled eggs for brains too. Showed up for parent teacher conferences a day early...on a holiday;) duh! Got to grocery store didnt have my credit card, checks, glasses or pen. Not sure what was in my completely full purse but nothing useful in purchasing groceries so I left without them. :sad2:

My sleep is off and my weight loss has stopped dead not to mention I didnt exersize for a week:guilty: Kids just too busy for my poor body to handle I guess. short bouts of extreme fatigue (a few hours here/there) but pain ok. However all those migraine symptoms. blurry vision, brian hiccups etc are a constant problem:headache:

just a mixed up mess. Still I'll take it over the constant exhastion had had all last year. If I could pick my poison this would be mine I guess.

Sending pain free vibes:goodvibes and pixie dust to allpixiedust:

[spatulaqueen27]

Hi Guys,

I am not sure if I have posted her before...my memory isn't as sharp as it used to be. :goodvibes

I was diagnosed with fibro a little over 2 years ago. I am 35 years old. In the grand scheme of things, my symptoms are mild but I am finding that the pain and the fatigue part of it is getting worse. I am in the middle of blood tests to make sure it isn't anything bad.

I will try to come here and talk with everyone. It is so nice to know that there are people around that I can talk to about this. Not everyone seems to understand as I don't show any symptoms on the outside. I have even lost a job due to this. :(

*hugs*

[tiggspring]

:welcome:Hi Guys,

I am not sure if I have posted her before...my memory isn't as sharp as it used to be. :goodvibes

I was diagnosed with fibro a little over 2 years ago. I am 35 years old. In the grand scheme of things, my symptoms are mild but I am finding that the pain and the fatigue part of it is getting worse. I am in the middle of blood tests to make sure it isn't anything bad.

I will try to come here and talk with everyone. It is so nice to know that there are people around that I can talk to about this. Not everyone seems to understand as I don't show any symptoms on the outside. I have even lost a job due to this. :(

*hugs*

spatulaqueen Welcome!

Dont think you have posted here before unless we have colective amnesia which is entirely possible:rotfl2:. Sometimes I dont know what is worse feeling terrible and everone noticing how off I am or being able to pull off "normal" then wondering if folks are thinking I'm a compaliner and nothing is really wrong with me. :confused3.

You will find the folks here a great help. It wonderfully cathartic to complain on a bad day somewhere where eveyone gets it.


Sending pain free vibes :goodvibes pixie dust to all:wizard:

[SeaSpray]

I'm sorry you are feeling so anxious!:hug:

I dont know how old you are but I have noticed that since I'm in perimenopause that certains weeks I'm much more irritated combined with FMS increases and intestinal issues:headache:. I have never had pms even a little. Have you notices any cycles with your anxiety? It might be hormonallly triggered.

I have scrambled eggs for brains too. Showed up for parent teacher conferences a day early...on a holiday;) duh! Got to grocery store didnt have my credit card, checks, glasses or pen. Not sure what was in my completely full purse but nothing useful in purchasing groceries so I left without them. :sad2:

My sleep is off and my weight loss has stopped dead not to mention I didnt exersize for a week:guilty: Kids just too busy for my poor body to handle I guess. short bouts of extreme fatigue (a few hours here/there) but pain ok. However all those migraine symptoms. blurry vision, brian hiccups etc are a constant problem:headache:

just a mixed up mess. Still I'll take it over the constant exhastion had had all last year. If I could pick my poison this would be mine I guess.

Sending pain free vibes:goodvibes and pixie dust to allpixiedust:

I'm 50 (when did THAT happen??? :lmao: ), so it's definitely possible that I'm beginning to feel menopause symptoms. I do think that the increased anxiety seems to occur alongside that time of the month.

I know that I never mentioned why my older DS23 is on disability, but a lot of my anxiety comes from worrying about him. He had/has severe mental health issues. He has come a very long way from where he was a few years ago, but as his mother, I worry about him so much, and his future. He moved about an hour away, last November, with 2 roommates, so that's good. And he comes home to visit a lot when he can get a ride, or when we go pick him up. In fact, he was able to get a ride last night, so he'll be here for a couple of days. When he's here, everything is great, his visits don't cause anxiety at all. But when he's back home, I worry a little more about him, and hope that his problems stay away, and that his current problems don't hold him back from progressing in the future. I see a psychologist for this anxiety, and without going in to details, I was diagnosed with Post Traumatic Stress Disorder in early 2009. None of this is good for my fibromyalgia of course, but we all have things in life that we have to deal with, right? And my son means the world to me. :sunny: Both of my sons do. :)

Hi Guys,

I am not sure if I have posted her before...my memory isn't as sharp as it used to be. :goodvibes

I was diagnosed with fibro a little over 2 years ago. I am 35 years old. In the grand scheme of things, my symptoms are mild but I am finding that the pain and the fatigue part of it is getting worse. I am in the middle of blood tests to make sure it isn't anything bad.

I will try to come here and talk with everyone. It is so nice to know that there are people around that I can talk to about this. Not everyone seems to understand as I don't show any symptoms on the outside. I have even lost a job due to this. :(

*hugs*

:welcome: :grouphug: Like Tigg said, this is a great place to just talk about your symptoms, to vent or complain, without the risk of sounding like a hypochondriac. I know that sometimes I think I probably sound like a hypochondriac to those who don't know or understand what we go through every day. :headache: :sick: I'm sorry about the loss of your job. :(

:welcome:

spatulaqueen Welcome!

Dont think you have posted here before unless we have colective amnesia which is entirely possible:rotfl2:. Sometimes I dont know what is worse feeling terrible and everone noticing how off I am or being able to pull off "normal" then wondering if folks are thinking I'm a compaliner and nothing is really wrong with me. :confused3.

You will find the folks here a great help. It wonderfully cathartic to complain on a bad day somewhere where eveyone gets it.


Sending pain free vibes :goodvibes pixie dust to all:wizard:

I agree, Tigg! lol

[mommasita]

Hi everyone. I have been a little MIA, and I am just so :upsidedow.. Thank you for all the hugs and support. I don't really know about much, and am in the wait and see mode from my insurance company, my Dr's and such..

SeaSpray :hug: I am sorry you are having a bit of a hard time..I send GIANT hugs and hope things lighten up a little at a time.

tiggspring: :hug: My memory is the same. And seems to be worse lately. I think that is why I feel so comfortable here. I feel like I won't be judged if I forget, take a while to respond, or am having a few off days. I feel like we ALL have so much in common that we just get each other...If that makes sense:laughing:

spatulaqueen27 :welcome: As I said in my PM, I am so sorry about your job and what you are going through..:hug: Having a place such as this is just SO great to me, and I hope you feel more than welcome.

EDuke98080 Hi, I am quite new, but wanted to send some:hug:

[tiggspring]

I'm 50 (when did THAT happen??? :lmao: ), so it's definitely possible that I'm beginning to feel menopause symptoms. I do think that the increased anxiety seems to occur alongside that time of the month.

I know that I never mentioned why my older DS23 is on disability, but a lot of my anxiety comes from worrying about him. He had/has severe mental health issues. He has come a very long way from where he was a few years ago, but as his mother, I worry about him so much, and his future. He moved about an hour away, last November, with 2 roommates, so that's good. And he comes home to visit a lot when he can get a ride, or when we go pick him up. In fact, he was able to get a ride last night, so he'll be here for a couple of days. When he's here, everything is great, his visits don't cause anxiety at all. But when he's back home, I worry a little more about him, and hope that his problems stay away, and that his current problems don't hold him back from progressing in the future. I see a psychologist for this anxiety, and without going in to details, I was diagnosed with Post Traumatic Stress Disorder in early 2009. None of this is good for my fibromyalgia of course, but we all have things in life that we have to deal with, right? And my son means the world to me. :sunny: Both of my sons do. :)



:welcome: :grouphug: Like Tigg said, this is a great place to just talk about your symptoms, to vent or complain, without the risk of sounding like a hypochondriac. I know that sometimes I think I probably sound like a hypochondriac to those who don't know or understand what we go through every day. :headache: :sick: I'm sorry about the loss of your job. :(



I agree, Tigg! lol

WOW you have had alot on your plate! Having done a stint in kids community mental heath after working at the hospital, I know what a challenge you had as a family. Not just in dealing with his issues but the system as well. Often it is such a hinderance to improvemnt especially is you get the wromg person to work with:headache:

What an accomplishment for both you and your son! Not only is he independant but in college something many average kids dont do. cudos MOM!:cool1:

[tiggspring]

Hi everyone. I have been a little MIA, and I am just so :upsidedow.. Thank you for all the hugs and support. I don't really know about much, and am in the wait and see mode from my insurance company, my Dr's and such..

SeaSpray :hug: I am sorry you are having a bit of a hard time..I send GIANT hugs and hope things lighten up a little at a time.

tiggspring: :hug: My memory is the same. And seems to be worse lately. I think that is why I feel so comfortable here. I feel like I won't be judged if I forget, take a while to respond, or am having a few off days. I feel like we ALL have so much in common that we just get each other...If that makes sense:laughing:

spatulaqueen27 :welcome: As I said in my PM, I am so sorry about your job and what you are going through..:hug: Having a place such as this is just SO great to me, and I hope you feel more than welcome.

EDuke98080 Hi, I am quite new, but wanted to send some:hug:

Dont you just hate the waiting game?:headache: Always depending on others decisions before you can move forward in deciding what is best for you.

Well I'm a little bummed this week. I'm not losing weight despite exersizing and trying to cut back (not always successful I'm afraid:headache:). My memory is crazy off the charts bad. Which I could deal with if my normaly very supportive husband wasnt being so nasty with me. I realize he REALY HATES THIS SYMPTOM. He is not one to suffer fools so this makes it worse. He has been very short, argumentative and has said some hurtful things. Then when I bring them up he acts like they didnt happen which gets me really angry then very sad. I dont mind being blamed for things I really do forget but it is a very helpless feeling to have your fibro used against you when you know you remember correctly:mad: As I've said before when I dont remember its like a black hole not I remember incorrectly.

Anyway, on a day I should be really excited because I just bough all the gift cards needed for our cruise saving us $690 in free gas and another $40 in free groceries once we buy the gas, I feel sad and alone and definately dont want to go on a cruise with somone who uses a tone that makes me feel stupid. Now we have been married for 17yrs and have been through this before many times but it still hurts to have your disease used gainst you.:sad2:

Ok pity party over

Sending pain free vibes:goodvibes and pixie dust to all.:wizard:

[tiggspring]

btw has anyone here jpined a fish hooks club while on a DCL cruise. I've been invited to join and need so good inexpensive ideas.

THanks.

[SeaSpray]

Good morning everyone :wave2:

I hope everyone is doing ok. It finally snowed here yesterday and fortunately we only got a couple of inches, and I think it's melting already today. I had a dream last night that it was May 1st, not March 1st. I guess I'm eager for spring, and my cruise in May. lol

My aches and pains have been a bit better the last couple of days, but boy my brain-fog and memory are noticably worse. :confused: OH well, maybe one day I'll feel ok physically and not feet foggy. lol



Hi everyone. I have been a little MIA, and I am just so :upsidedow.. Thank you for all the hugs and support. I don't really know about much, and am in the wait and see mode from my insurance company, my Dr's and such..

SeaSpray :hug: I am sorry you are having a bit of a hard time..I send GIANT hugs and hope things lighten up a little at a time.

tiggspring: :hug: My memory is the same. And seems to be worse lately. I think that is why I feel so comfortable here. I feel like I won't be judged if I forget, take a while to respond, or am having a few off days. I feel like we ALL have so much in common that we just get each other...If that makes sense:laughing:

spatulaqueen27 :welcome: As I said in my PM, I am so sorry about your job and what you are going through..:hug: Having a place such as this is just SO great to me, and I hope you feel more than welcome.

EDuke98080 Hi, I am quite new, but wanted to send some:hug:

You definitely won't be judged here. We all know how it is. There were a couple of months where all I could do was read here; I literally did not have the energy to type a reply. I guess I could've type a "hello". lol

WOW you have had alot on your plate! Having done a stint in kids community mental heath after working at the hospital, I know what a challenge you had as a family. Not just in dealing with his issues but the system as well. Often it is such a hinderance to improvemnt especially is you get the wromg person to work with:headache:

What an accomplishment for both you and your son! Not only is he independant but in college something many average kids dont do. cudos MOM!:cool1:

Thanks tigg. We/He really have come a long way. But I think you have my 2 sons mixed up a little. :upsidedow

My older son is 23 (will be 24 this month), and he is the one with the mental health issues. He's on disability and lives with roommates an hour away, but comes home a lot. He's currently not working, but that is something that he is hoping to work towards. He sees an excellent psychologist (and so do I. lol). He is still quite a long way from being fully independent, but he is making progress, so that is really good. Things were at their worst in summer of 2009.

He's a funny, handsome, polite, and very intelligent person, but his mental health issues are almost as crippling as any physical disability.

My younger son is 20 (he'll be 21 in April), and he lives at home but goes full time to college, and works part time in his girl friend's parent's restaurant.

[tiggspring]

Thanks tigg. We/He really have come a long way. But I think you have my 2 sons mixed up a little. :upsidedow



SORRY :guilty: go figure.

[SeaSpray]

Dont you just hate the waiting game?:headache: Always depending on others decisions before you can move forward in deciding what is best for you.

Well I'm a little bummed this week. I'm not losing weight despite exersizing and trying to cut back (not always successful I'm afraid:headache:). My memory is crazy off the charts bad. Which I could deal with if my normaly very supportive husband wasnt being so nasty with me. I realize he REALY HATES THIS SYMPTOM. He is not one to suffer fools so this makes it worse. He has been very short, argumentative and has said some hurtful things. Then when I bring them up he acts like they didnt happen which gets me really angry then very sad. I dont mind being blamed for things I really do forget but it is a very helpless feeling to have your fibro used against you when you know you remember correctly:mad: As I've said before when I dont remember its like a black hole not I remember incorrectly.

Anyway, on a day I should be really excited because I just bough all the gift cards needed for our cruise saving us $690 in free gas and another $40 in free groceries once we buy the gas, I feel sad and alone and definately dont want to go on a cruise with somone who uses a tone that makes me feel stupid. Now we have been married for 17yrs and have been through this before many times but it still hurts to have your disease used gainst you.:sad2:

Ok pity party over

Sending pain free vibes:goodvibes and pixie dust to all.:wizard:

I'm sorry that you're having a rough week. :hug: My DH has his "moods" sometimes, too, and he also tries to tell me that I'm remembering this incorrectly! He's never said that it's due to my fibro, but still.... like you said, I know what I remember! It's the stuff that I totally don't remember that I blame on the fibro. (Did that just make sense at all? lol) My DH also doesn't understand my rheumatoid arthritis and plantar fasciitis, and thinks that if I just exercise more that it'd all go away. :rolleyes: He really has no idea of the pain that I'm in every day, and for every bit of pain that I mention there is 100 times that, that I don't mention for fear of sounding like a constant complainer. :sad2:

Anyway... I hope your DH gets back to being his supportive self soon. :) Try and think of the cruise and all of the fun you will have. I love cruising because once you're on board, you let everyone else do all the work for you all week! :cool2:

Wow, you got some great deals on gift cards! Where were you able to purchase them??

btw has anyone here jpined a fish hooks club while on a DCL cruise. I've been invited to join and need so good inexpensive ideas.

THanks.

Ok that is just too cute "fish hooks club"! I love it! It's actually called "fish extenders" but I like "fish hooks" much better! :fish:

I've joined the fish extender group on my cruise. I almost decided to not do it because I didn't want the added stress or work of coming up with gift ideas. The people on my cruise reassured me that it's not the gift itself that matters, it's the fun of returning to your cabin and finding a little surprise waiting for you that matters. So... I'm going to purchase some small gift items (I've seen some very cute flip-flop shaped post-it note pads), and maybe small items for the kids on our cruise. I'm also purchasing lime green leis for everyone on our cruise, to hand out on the first day. Last fall I bought supplies to make hand-painted picture frames/magnets, and I did make a couple of prototypes, but I don't know if I'll have the energy or mind to complete them all. :sad2:

It's supposed to be a fun thing, so as long as it doesn't stress you out, then I'd say to join. I ordered a fish extender thingy from ebay, and it came in the mail yesterday. It's really cute, and I found someone who charges only $20. Some of them on ebay go for $40.

Here is what mine looks like, except I paid $6 extra to have the first mickey head wear a pirate hat and the name "John" embroidered under it, and the second mickey is wearing a tiara with the name "Terry" under it. :)

http://i.ebayimg.com/t/Custom-Made-Fish-Extender-DCL-can-personalized-/13/!Bu7W,zQEGk~$(KGrHqN,!jkEv1+0BiC2BMC,eE3N8g~~_12.J PG

Thanks tigg. We/He really have come a long way. But I think you have my 2 sons mixed up a little. :upsidedow



SORRY :guilty: go figure.

Please don't be sorry! :hug: I haven't mentioned my sons too much here, so I'm impressed that you even remembered the details of both of them. :)

[tiggspring]

I'm sorry that you're having a rough week. :hug: My DH has his "moods" sometimes, too, and he also tries to tell me that I'm remembering this incorrectly! He's never said that it's due to my fibro, but still.... like you said, I know what I remember! It's the stuff that I totally don't remember that I blame on the fibro. (Did that just make sense at all? lol) My DH also doesn't understand my rheumatoid arthritis and plantar fasciitis, and thinks that if I just exercise more that it'd all go away. :rolleyes: He really has no idea of the pain that I'm in every day, and for every bit of pain that I mention there is 100 times that, that I don't mention for fear of sounding like a constant complainer. :sad2:

Anyway... I hope your DH gets back to being his supportive self soon. :) Try and think of the cruise and all of the fun you will have. I love cruising because once you're on board, you let everyone else do all the work for you all week! :cool2:

Wow, you got some great deals on gift cards! Where were you able to purchase them??



Ok that is just too cute "fish hooks club"! I love it! It's actually called "fish extenders" but I like "fish hooks" much better! :fish:

I've joined the fish extender group on my cruise. I almost decided to not do it because I didn't want the added stress or work of coming up with gift ideas. The people on my cruise reassured me that it's not the gift itself that matters, it's the fun of returning to your cabin and finding a little surprise waiting for you that matters. So... I'm going to purchase some small gift items (I've seen some very cute flip-flop shaped post-it note pads), and maybe small items for the kids on our cruise. I'm also purchasing lime green leis for everyone on our cruise, to hand out on the first day. Last fall I bought supplies to make hand-painted picture frames/magnets, and I did make a couple of prototypes, but I don't know if I'll have the energy or mind to complete them all. :sad2:

It's supposed to be a fun thing, so as long as it doesn't stress you out, then I'd say to join. I ordered a fish extender thingy from ebay, and it came in the mail yesterday. It's really cute, and I found someone who charges only $20. Some of them on ebay go for $40.

Here is what mine looks like, except I paid $6 extra to have the first mickey head wear a pirate hat and the name "John" embroidered under it, and the second mickey is wearing a tiara with the name "Terry" under it. :)

http://i.ebayimg.com/t/Custom-Made-Fish-Extender-DCL-can-personalized-/13/!Bu7W,zQEGk~$(KGrHqN,!jkEv1+0BiC2BMC,eE3N8g~~_12.J PG



Please don't be sorry! :hug: I haven't mentioned my sons too much here, so I'm impressed that you even remembered the details of both of them. :)

That FE is cute! Could you pm me where you got it? Thought I saw the nick name fish hooks somwhere. Maybe I just started a new nickname by accident;)

I waitied for my gift card to go on double fuel perks at Giant eagle grocery stores. Since you live in NE I'll explain. Warning You might need to read it twice:rotfl2:

My grocery store gives .10 off each gal of gas for every $50 you spend. You can buy 30 gals per fill up at a discount for a total of $3.00 per gal. There is no limit to how many perks you can earn so right now aprox $110 for a free fill up. Now Citizens bank will throw in .03 cents more if you use their debit credit card. Every now and then when you buy gift cards you get double perks or .23 per gal if you use both your grocery card and citizens card. Disney gift cards went on sale last week. :dance3::dance3:

Our cruise for 5 had 5000 left so I earned $690 in free gas. I already filled up once and now have 2+ months to use the 6 additional fill ups. We have lots of gas cans enough for 30 gal since my DF gave me several when she moved. And since DH drives from Pittsburgh to Cleaveland every week until may and there are 5 weeks in March we will have no trouble using up our gas:scared1: :scared1: I do have a needy family in mind just in case we have some extra. It also means all the perks I earn in the mean time will be saved so I doubt either of us will buy gas for three to four months.

An additional benifit is for every 10 gal of gas I buy I get 1percent off groceries. up to 20 percent per shopping trip off $300 of groceries. So I will save $63 more (miscalculated last Time) Add my 250 ship credit and I got aprox $1000 off our trip:dance3: This is the only way this family of five can afford to go since we either have to get double rooms or delux that can hold five which is what we prefer.:lovestruc

Did you get all that LOL:rotfl2::lmao::rotfl2:

This is how I purchase most everything. I make a list of what we want/need wait aprox 2months for gift cards to double then buy items on sale or on amazon cards. Last year this combined with stocking up on meat etc when its bogo free saved me just under $5000. This year think it might be closer to 6000 with this trip:thumbsup2

Whewww! cant believe my brain got all that out. ;) It took awhile but I did it:cheer2:

[SeaSpray]

That FE is cute! Could you pm me where you got it? Thought I saw the nick name fish hooks somwhere. Maybe I just started a new nickname by accident;)

I waitied for my gift card to go on double fuel perks at Giant eagle grocery stores. Since you live in NE I'll explain. Warning You might need to read it twice:rotfl2:

My grocery store gives .10 off each gal of gas for every $50 you spend. You can buy 30 gals per fill up at a discount for a total of $3.00 per gal. There is no limit to how many perks you can earn so right now aprox $110 for a free fill up. Now Citizens bank will throw in .03 cents more if you use their debit credit card. Every now and then when you buy gift cards you get double perks or .23 per gal if you use both your grocery card and citizens card. Disney gift cards went on sale last week. :dance3::dance3:

Our cruise for 5 had 5000 left so I earned $690 in free gas. I already filled up once and now have 2+ months to use the 6 additional fill ups. We have lots of gas cans enough for 30 gal since my DF gave me several when she moved. And since DH drives from Pittsburgh to Cleaveland every week until may and there are 5 weeks in March we will have no trouble using up our gas:scared1: :scared1: I do have a needy family in mind just in case we have some extra. It also means all the perks I earn in the mean time will be saved so I doubt either of us will buy gas for three to four months.

An additional benifit is for every 10 gal of gas I buy I get 1percent off groceries. up to 20 percent per shopping trip off $300 of groceries. So I will save $63 more (miscalculated last Time) Add my 250 ship credit and I got aprox $1000 off our trip:dance3: This is the only way this family of five can afford to go since we either have to get double rooms or delux that can hold five which is what we prefer.:lovestruc

Did you get all that LOL:rotfl2::lmao::rotfl2:

This is how I purchase most everything. I make a list of what we want/need wait aprox 2months for gift cards to double then buy items on sale or on amazon cards. Last year this combined with stocking up on meat etc when its bogo free saved me just under $5000. This year think it might be closer to 6000 with this trip:thumbsup2

Whewww! cant believe my brain got all that out. ;) It took awhile but I did it:cheer2:

Thanks for explaining, that is very clever of you!!!! Now that I'm unemployed, I need to look in to more ways to save $$$.

I will send you a link to the ebay seller that made my FE for me. :)

[mommasita]

tiggspring First of all :grouphug: .. What a smart gal you are saving all that!! Kudos to you. I have never done the fish extender. I always book last minute. SeaSpray explained it quite well, and it does always look so fun. Who doesn't love surprises :love:

I hope today is a bit better for you. The ones closest to us hurt us the most. :grouphug: Hoping he is back to his normal ways, and you can enjoy what you have accomplished, and countdown to cruising.

SeaSpray: We have had 2 MAJOR snowstorms in a week, and having a small one overnight. We had NOTHING on the ground. I am so done with winter.:sad2: Although they are announcing very mild temps next week, so that should melt some of that. My girlfriend and I decided last night we are going to bring our DD's to NYC next week for 2 or 3 days. We are on spring break so it will break that up a little.

Glad to hear you are feeling a little less pain.


Yes, I am frustrated beyond reason. My Dr said I have to get over the hurt and learn to be :mad:. I guess I will get there, but now still having a small pity party. I think I am the type of person who needs everything clarified. Explain things and I am good to go. Don't say well one thing, then another, then we will see. What can I do... DH is on vacation in 2 weeks and we are looking at going south for a week. As it stands I will probably be looking for a new job, so won't have a vacation for quite some time.

I hope everyone has a nice weekend...

[brighteyes]

Hello everyone!!!!!!!! I missed you all soooo much. I have been away for a very long time but for no reason other than I have been working more lately, tired,fibro, and have had no computer for months and months........

I have not read the back threads because am not staying on the computer for long. I just wanted to say I have not been MIA b/c of a certain person whom I had problems with a LONG time ago. We were down to one desktop here and I have a teenager with lots of homework. :)

To update, I have been working more as a supply in the classrooms, mostly primary grades. I am also babysitting overnights, which is easy for my fibro, and still at my afterschool program with the little ones.

I also got a little puppy last easter. She is the cutest little thing, she weighs all of 8 lbs and is a year old now. THe kitty tolerates her and she tries to play with him but he just ignores her. She gets me out two to four times a day for a short walk for about 10 -15 mins so I find that helps my fibro. Plus she is so happy everytime I come home that it is hard to be grumpy when I'm having a bad day :love:

I just got a disney code for free dining but it is only good until the end of june, which is the day DS gets out of school. Do you think they will have free dining through the rest of summer???

Ok so now I will go read a bit to catch up on all of you. I hope you are all well and I have missed you :hug:

[tiggspring]

Hello everyone!!!!!!!! I missed you all soooo much. I have been away for a very long time but for no reason other than I have been working more lately, tired,fibro, and have had no computer for months and months........

I have not read the back threads because am not staying on the computer for long. I just wanted to say I have not been MIA b/c of a certain person whom I had problems with a LONG time ago. We were down to one desktop here and I have a teenager with lots of homework. :)

To update, I have been working more as a supply in the classrooms, mostly primary grades. I am also babysitting overnights, which is easy for my fibro, and still at my afterschool program with the little ones.

I also got a little puppy last easter. She is the cutest little thing, she weighs all of 8 lbs and is a year old now. THe kitty tolerates her and she tries to play with him but he just ignores her. She gets me out two to four times a day for a short walk for about 10 -15 mins so I find that helps my fibro. Plus she is so happy everytime I come home that it is hard to be grumpy when I'm having a bad day :love:

I just got a disney code for free dining but it is only good until the end of june, which is the day DS gets out of school. Do you think they will have free dining through the rest of summer???

Ok so now I will go read a bit to catch up on all of you. I hope you are all well and I have missed you :hug:

Bright it is soooooo good to see you!!!!:cheer2:

When you get a chance work through the last several pages and get to know our new members. They have been a joy to chat with. :goodvibes

Congrats on the 30lbs! I have got stuck just under 10 since I joined wish and down 35 since the fall but it has been very discoraging because when I stick to my diet the past 6 weeks I dont budge which makes me go off it for a day or too:headache:dozens fo girl scout cookie boxes in house dont help either:rotfl2:

Please post some pix of your new "baby".;)

As far a WDW, it seems they have been more stingy with discounts lately but I havent watched too closely. You may want to wait a year or even two to go back. IMHO constuction is too intrusive for those of us who have to save for a few years just to go. Entire Fantasyland under contruction, last I knew several buildings on main street. The resort monorail will be down from 11am-6pm or so for construction at GF which means more buses and I'm sure more back ups in the busing system. Big thunder mountain thunder rr is down. snow white closes may 31 for construction so that area will be distroyed :headache:. Test track down til september. Here are some links of construction. The big box on main street is truely horrible. Disney usually does a much better job. I incuded some pix of the area between the Poly/ wedding Pav and GF. Its a good indication of how pervasive it is if they are letting it affect the weddings. It looks like brides arent being told of the changes snce they booked either:scared1:I know We felt our secound trip was a bit impacted by all the construction and it was nothing like this. Hopefully it will be done before our 20th aniversary. If I win the lottery or James gets a big job I hope to renew our vows there with a small group of friends in 2014:goodvibes


Maybe you wont feel bad about not going past year or so when you see this!

http://wdwdiscussion.com/2012/02/13/fantasylandbig-thunder-mountain-rr-construction-update/

http://www.disboards.com/showthread.php?t=2856208

http://www.wdwinfo.com/wdwinfo/rehab.htm

http://www.disboards.com/showthread.php?t=2839322&highlight=construction&page=2

[tiggspring]

oh and FP will be much more strictly inforced:headache: I know alot of debate on this but for those of us with FMS one less thing to worry about makes for a magical vaca.

[tiggspring]

Ok last post:rotfl2:

I have GREAT NEWS I've been soo gloomy I forgot to post it.

My DD7 is in a small Dance school and they were just invited to dance at WDW for the taping of the Christmas parade!!!:cheer2::cheer2::cheer2:

Now there have to be enough girls willing to go, tryouts at the school in October and again a WDW by their team but DH and I might be going to WDW in Nov to watch her dance:goodvibes:goodvibes.

This is sooo cool:goodvibes.

We have told DD just having the chance to try out is fantastic and if she gets cut even @ WDW we are just so proud she has been asked. I'm sure she will do fine but she was a little freaked at first. Then I asked her is she could remember a specific girl in any of the parades we saw. When she couldnt I said see you would be part of a large group if you make a mistake it will be covered by all the comotion. But all the small parts are what makes the whole look so great. It worked and she is excited now!

[mommasita]

tiggspring That is awesome news!!! Please keep us posted on everything. That must be SOOOO exciting :cheer2::cheer2::cheer2:

brighteyes HI, I am Sherrie, and I am new here. Your post is so uplifting, and I am happy to hear about your new baby.. She sounds adorable :love:

I hope everyone is doing well. TOmorrow night I leave in the middle of the night for NYC..:) I am really happy, and think this will be a nice trip with my DD and my friend and her DD...

[tiggspring]

tiggspring That is awesome news!!! Please keep us posted on everything. That must be SOOOO exciting :cheer2::cheer2::cheer2:

brighteyes HI, I am Sherrie, and I am new here. Your post is so uplifting, and I am happy to hear about your new baby.. She sounds adorable :love:

I hope everyone is doing well. TOmorrow night I leave in the middle of the night for NYC..:) I am really happy, and think this will be a nice trip with my DD and my friend and her DD...

Hi Sherrie,

Sneeking off at night trying to avoid that NYC traffic?:thumbsup2

Glad your feeling more upbeat. Have a great trip!

[tiggspring]

tiggspring That is awesome news!!! Please keep us posted on everything. That must be SOOOO exciting :cheer2::cheer2::cheer2:

brighteyes HI, I am Sherrie, and I am new here. Your post is so uplifting, and I am happy to hear about your new baby.. She sounds adorable :love:

I hope everyone is doing well. TOmorrow night I leave in the middle of the night for NYC..:) I am really happy, and think this will be a nice trip with my DD and my friend and her DD...

Hi Sherrie,

Sneeking off at night trying to avoid that NYC traffic?:thumbsup2

Glad your feeling more upbeat. Have a great trip!

[mommasita]

Hi Sherrie,

Sneeking off at night trying to avoid that NYC traffic?:thumbsup2

Glad your feeling more upbeat. Have a great trip!

:thumbsup2 Yep, that's about the reason .>LOL..
That and we are not there very long, so the earlier we get there, the more we can make out of the first day :)

Thank you.:hug:

[SeaSpray]

Hi everyone:

I'll write more tomorrow but I just needed a place to vent tonight. Today I had to run a couple of errands and I walked for maybe a TOTAL of 30 minutes, and then the pain in my foot became excruciating due to plantar fasciitis.

I know that this is the fibromyalgia thread, but I feel like you guys understand all of our aches and pains, just nobody else does.

I called the podiatrist today and the soonest they can get me in is Monday, March 19th. Hopefully he'll give me a cortisone injection in my heel. Yes it's painful, but to get some relief I'll endure for a few minutes of pain. :(

I think if we didn't have the cruise coming up I wouldn't be as concerned as I am. How am I going to do on the cruise when I won't even be able to walk enough to get through the airport??? UGH!

Also, my DH is usually pretty good about things but tonight he really aggravated me. I know that he has neuralgia in his feet, but I don't want to hear "Well my feet hurt too" when I say how bad the PF is flaring lately, and especially today.

Anyway, thanks for listening to my pity party tonight. I hope everyone is doing ok. :flower3:

[tiggspring]

Hi everyone:

I'll write more tomorrow but I just needed a place to vent tonight. Today I had to run a couple of errands and I walked for maybe a TOTAL of 30 minutes, and then the pain in my foot became excruciating due to plantar fasciitis.

I know that this is the fibromyalgia thread, but I feel like you guys understand all of our aches and pains, just nobody else does.

I called the podiatrist today and the soonest they can get me in is Monday, March 19th. Hopefully he'll give me a cortisone injection in my heel. Yes it's painful, but to get some relief I'll endure for a few minutes of pain. :(

I think if we didn't have the cruise coming up I wouldn't be as concerned as I am. How am I going to do on the cruise when I won't even be able to walk enough to get through the airport??? UGH!

Also, my DH is usually pretty good about things but tonight he really aggravated me. I know that he has neuralgia in his feet, but I don't want to hear "Well my feet hurt too" when I say how bad the PF is flaring lately, and especially today.

Anyway, thanks for listening to my pity party tonight. I hope everyone is doing ok. :flower3:
Totaly get it! Hang in there:grouphug:

[EDuke98080]

Hello everyone!!!!!!!! I missed you all soooo much. I have been away for a very long time but for no reason other than I have been working more lately, tired,fibro, and have had no computer for months and months........

I have not read the back threads because am not staying on the computer for long. I just wanted to say I have not been MIA b/c of a certain person whom I had problems with a LONG time ago. We were down to one desktop here and I have a teenager with lots of homework. :)

To update, I have been working more as a supply in the classrooms, mostly primary grades. I am also babysitting overnights, which is easy for my fibro, and still at my afterschool program with the little ones.

I also got a little puppy last easter. She is the cutest little thing, she weighs all of 8 lbs and is a year old now. THe kitty tolerates her and she tries to play with him but he just ignores her. She gets me out two to four times a day for a short walk for about 10 -15 mins so I find that helps my fibro. Plus she is so happy everytime I come home that it is hard to be grumpy when I'm having a bad day :love:

I just got a disney code for free dining but it is only good until the end of june, which is the day DS gets out of school. Do you think they will have free dining through the rest of summer???

Ok so now I will go read a bit to catch up on all of you. I hope you are all well and I have missed you :hug:

Hi Bright! Glad to "see" you. Congrats on your puppy! My dogs help me stay active as well. I have been MIA too most of the time. Fibro and my back injury have been kicking my butt. Been the worst ever but I insist on still doing my tax volunteer work at the senior center (3 hours, one day a week) so I usually have no energy left to type at all. Been only doing what I have to, house is a mess, laundry always behind and too much pain to go anywhere or do anything fun. Feel terrible for my DH who has to tolerate me being such a mess. Trying like crazy to suck it up.

Hope everyone else is having pain free days!

Erika

[EDuke98080]

Hi everyone:

I'll write more tomorrow but I just needed a place to vent tonight. Today I had to run a couple of errands and I walked for maybe a TOTAL of 30 minutes, and then the pain in my foot became excruciating due to plantar fasciitis.

I know that this is the fibromyalgia thread, but I feel like you guys understand all of our aches and pains, just nobody else does.

I called the podiatrist today and the soonest they can get me in is Monday, March 19th. Hopefully he'll give me a cortisone injection in my heel. Yes it's painful, but to get some relief I'll endure for a few minutes of pain. :(

I think if we didn't have the cruise coming up I wouldn't be as concerned as I am. How am I going to do on the cruise when I won't even be able to walk enough to get through the airport??? UGH!

Also, my DH is usually pretty good about things but tonight he really aggravated me. I know that he has neuralgia in his feet, but I don't want to hear "Well my feet hurt too" when I say how bad the PF is flaring lately, and especially today.

Anyway, thanks for listening to my pity party tonight. I hope everyone is doing ok. :flower3:

Pitty Parties allowed! I totally understand. Hope tomorrow is better.

[mommasita]

Hi everyone:

I'll write more tomorrow but I just needed a place to vent tonight. Today I had to run a couple of errands and I walked for maybe a TOTAL of 30 minutes, and then the pain in my foot became excruciating due to plantar fasciitis.

I know that this is the fibromyalgia thread, but I feel like you guys understand all of our aches and pains, just nobody else does.

I called the podiatrist today and the soonest they can get me in is Monday, March 19th. Hopefully he'll give me a cortisone injection in my heel. Yes it's painful, but to get some relief I'll endure for a few minutes of pain. :(

I think if we didn't have the cruise coming up I wouldn't be as concerned as I am. How am I going to do on the cruise when I won't even be able to walk enough to get through the airport??? UGH!

Also, my DH is usually pretty good about things but tonight he really aggravated me. I know that he has neuralgia in his feet, but I don't want to hear "Well my feet hurt too" when I say how bad the PF is flaring lately, and especially today.

Anyway, thanks for listening to my pity party tonight. I hope everyone is doing ok. :flower3:
:grouphug:

Hugs to you ... I understand...You can get a wheelchair to get through the length of the airport....And honestly for me the cruise is the best way to travel these days for those of us with mobility and pain issues... I find the length of walking on resorts impossible, but the cruise is sooo much less walking...

I hope you are feeling slightly better :flower3:

[TLSnell1981]

Hi everyone:
I think if we didn't have the cruise coming up I wouldn't be as concerned as I am. How am I going to do on the cruise when I won't even be able to walk enough to get through the airport??? UGH!
, but I don't want to hear "Well my feet hurt too" when I say how bad the PF is flaring lately, and especially today.

Anyway, thanks for listening to my pity party tonight. I hope everyone is doing ok. :flower3:

I agree with PP, use a wheelchair in the airport. Possibly, a cane may give you, a bit of relief. While, rest, stretching and ice should also help....I'd also check into a good insert.

I can throw a really good pity party..... I am the Queen. :rotfl:

Seriously, sorry you are having a rough time. I hope you find, some relief soon.:hug:

[spatulaqueen27]

Hi All, I am still around. Just busy planning my October trip!

So, what a few weeks it has been. Over the winter, I have found that I was feeling worse and worse. The medication I was on (amitriptyline) just wasn't doing it and my insomnia got worse. Consequently, the pain got worse. Then my heart started racing. This used to happen from time to time but it was constant. I finally get in to see the Dr, and my pulse was 140!!! Had to go for an emergency ECG and my doctor took me off the meds cold turkey (that has been another challenge, I feel like poopie). I guess it is a rare side effect of the meds after taking them awhile.

Anyhow he puts me on beta blockers which slows down the heart, but makes you MORE tired and now nauseous. So I am sleeping in till noonish and still not feel rested. I have an appointment this tues so I hope he takes me off the blockers and on something else. He suggested Lyrica and I am covered with my insurance.

All this is happening while I plan my trip! Was going to stay onsite, but we found a darling condo cheaper per night than a mod! It is also good as I will need my space for resting. The private lounge pool doesn't hurt either.

So, here is my question. I was diagnosed after my last trip so other than the after park soreness, I was ok. Do you all have any tips in surviving the parks? Thanks again. :banana:

[tiggspring]

Hi All, I am still around. Just busy planning my October trip!

So, what a few weeks it has been. Over the winter, I have found that I was feeling worse and worse. The medication I was on (amitriptyline) just wasn't doing it and my insomnia got worse. Consequently, the pain got worse. Then my heart started racing. This used to happen from time to time but it was constant. I finally get in to see the Dr, and my pulse was 140!!! Had to go for an emergency ECG and my doctor took me off the meds cold turkey (that has been another challenge, I feel like poopie). I guess it is a rare side effect of the meds after taking them awhile.

Anyhow he puts me on beta blockers which slows down the heart, but makes you MORE tired and now nauseous. So I am sleeping in till noonish and still not feel rested. I have an appointment this tues so I hope he takes me off the blockers and on something else. He suggested Lyrica and I am covered with my insurance.

All this is happening while I plan my trip! Was going to stay onsite, but we found a darling condo cheaper per night than a mod! It is also good as I will need my space for resting. The private lounge pool doesn't hurt either.

So, here is my question. I was diagnosed after my last trip so other than the after park soreness, I was ok. Do you all have any tips in surviving the parks? Thanks again. :banana:

Hi again!

I'm too pooped and busy planing Dream cruise to talk today but I did manage to find this old post that might help. You know it wil be interesting when you atart your search out with the word bengay:lmao: Anyway. I would add i your driving use bengay and a cigeret lighter plug in heating pad/massager. Dont forget to stretch alot either at rest stops or off planes. If you have a smartphone combine mobile magic or other program with ridmax. I SOOOO LOVE RIDMAX:lovestruc. Hope this old post helps.

Dana

As far as Disney I was determined to not use a scooter last year. I wanted my vacation to be a vacation from everthing including the Fibro ( I know wishful thinking). Looking at a scooter after ever ride would have ruined the magic so I planned to the extreme and it worked for a week and then I crashed for several and it took months to get back on my feet. I know he two week crash was due to the trip. Not sure what casues the next 9 months:confused3.

The top two things that helped were staying in May because I'm intollerant of heat/cold and staying in Tahiti at the poly so I could get back to the room quickly to allievate a migraine or crash. Extra driving and/or busses is just too much for me over 7 days. I see you going in May so that a big plus:thumbsup2

These things helped me. 1. I packed a month in advance and stayed in bed as much as possible the week before we went. So I was not stressing about bags the week before we went or over exerting myself. Since we went in May I bought all of our summer clothes shoes and just packed them right away. 2. Each kid even my 4 yr old had a fanny pack with a fan mister (hanging outside), drink, snack ,hand wash, autograph book and pen, penny press book, neck cooler and map. This kept everyone independant and stopped mom from searching for everything every time someone needed something small:thumbsup2 3. USE RIDEMAX!!! I cant say enough about this program. We waited on average 5 min. It was right on the money and the kids didnt fight all week! each kid gave me their must see rides for the day and they new the list would avoid lines so they didnt fight over who got to pick the next ride and Mom and Dad didnt "play favorites" because it was the list that told us where to go. It basicly keep us moving for 5min standing for 5min then the ride or show. This pattern really kept me from getting too tired and too stiff :worship:Priceless on so many levels.4. To avoid exhastion I planed to do one side of the park per day. On the day we went to Adventure land we took the train at opening and since I'm slow we arrived in the same amount of time as it would have taken to walk .5. ( you might not want to do this) I pulled myself off my pain meds the month before I went because they stop working after awhile. by doing this they worked much better on my trip. I also got some stronger meds from my DR in case of an emergency 6. we kept a link to all ears menues and the Dis snack thread on our black berry. while we were in line the kids would decide what they wanted to eat then there was no meltdowns while dinning and we got our meals much faster. You could also print them out. 7. we were a bit fanatical about purell on/off rides and clorox wipes on remotes/doornobs in the room. I knew several people who went last May all got sick but us so it must have worked;)8.We laid out all the clothes the night before so Mom did'nt have to go looking in the AM. I could take a shower every morning as well as every night to avoid stiffness. Our biggest problem last year was packing back up:sad2: so this year we are ging to AK our last full day so we have a bit more time in the hotel room. I am also planning to put each days dirty clothes in a large ziplock then having DH put them in an empty suitcase in our van every am before we go out. The Handicap parking is really close to Tahiti so we pass it any time we go on the ttc and we will be mostly packed by Fri!

Really it came down to obsessive planning based on my Fibro and my kids habits.

hope this helps!

[SeaSpray]

Hey Tigg, thanks so much for posting on my thread on the cruise board. I really was venting, wasn't I? lol Not feeling well today, hormones are running rampant, and I had a couple of very unfulfilling conversations with DCL. Like the perfect storm for getting fairly upset. lol

I'm over it now, and I have to remind myself that stress is one of the worst things for fibromyalgia, so it's not worth it. I'm sorry that one of the posters got nasty with you. :hug:

[tiggspring]

Hey Tigg, thanks so much for posting on my thread on the cruise board. I really was venting, wasn't I? lol Not feeling well today, hormones are running rampant, and I had a couple of very unfulfilling conversations with DCL. Like the perfect storm for getting fairly upset. lol

I'm over it now, and I have to remind myself that stress is one of the worst things for fibromyalgia, so it's not worth it. I'm sorry that one of the posters got nasty with you. :hug:

No problem. I thought about posting before I realized it was you wich took a few minutes;). Then I just had to post. Us old fibro broads have to stick together!:grouphug:

Are we close to a full moon? I asked a question about where to put carry on luggage and another poster got snippy with me like I implied somone would steal my stuff:confused3. What I was saying is I didnt want to leave booze around unattended with little kids all over:confused3 Seems people are a bit touchy today. You were right to be dissapointed. Besides I'm right too. Did you see the age of the nasty poster? 31:lmao: point and match to me:rotfl2:

For once its not our fibro making us irritable its the full moon or whatever is in the air making them all a bit nuts:rotfl:

[mommasita]

Hi everyone.:grouphug: Gentle hugs to everyone, and extra for those of us (ALL OF US;)) who need them.

It has been a week from hell. My stepsister had a surgery for her 4th aneur and had a stroke and so many complications, but thankfully will make it. It is all on the coping and compassion, I am just exhausted.. IT was touch and go for a while, and thankfully she is stable.

My son also turned 16 Sunday, and we are leaving for MUCH NEEDED vacation in Mexico in the early hours and returning late Sunday evening. Things have been more stressful of late.

I hope everyone is doing well.:hug::grouphug::flower3:

[tiggspring]

Hi everyone.:grouphug: Gentle hugs to everyone, and extra for those of us (ALL OF US;)) who need them.

It has been a week from hell. My stepsister had a surgery for her 4th aneur and had a stroke and so many complications, but thankfully will make it. It is all on the coping and compassion, I am just exhausted.. IT was touch and go for a while, and thankfully she is stable.

My son also turned 16 Sunday, and we are leaving for MUCH NEEDED vacation in Mexico in the early hours and returning late Sunday evening. Things have been more stressful of late.

I hope everyone is doing well.:hug::grouphug::flower3:

Sorry!:grouphug:

Hope Vaca helps:goodvibes

[tiggspring]

Hi All, I am still around. Just busy planning my October trip!

So, what a few weeks it has been. Over the winter, I have found that I was feeling worse and worse. The medication I was on (amitriptyline) just wasn't doing it and my insomnia got worse. Consequently, the pain got worse. Then my heart started racing. This used to happen from time to time but it was constant. I finally get in to see the Dr, and my pulse was 140!!! Had to go for an emergency ECG and my doctor took me off the meds cold turkey (that has been another challenge, I feel like poopie). I guess it is a rare side effect of the meds after taking them awhile.

Anyhow he puts me on beta blockers which slows down the heart, but makes you MORE tired and now nauseous. So I am sleeping in till noonish and still not feel rested. I have an appointment this tues so I hope he takes me off the blockers and on something else. He suggested Lyrica and I am covered with my insurance.

All this is happening while I plan my trip! Was going to stay onsite, but we found a darling condo cheaper per night than a mod! It is also good as I will need my space for resting. The private lounge pool doesn't hurt either.

So, here is my question. I was diagnosed after my last trip so other than the after park soreness, I was ok. Do you all have any tips in surviving the parks? Thanks again. :banana:

In my op of how to survive the parks I stressed staying on monorail if possible. The condo for so many reason will be great especially since the monorail is down 7hrs a day:scared1: for who knows how long due to the construction. Construction and fibro mmmmmm:scared1:


As my gradma used to say "I'm too pooped to pop" that about sums me up.


If you dont mind I'd like some major pixie dust from you all the next 5 weeks!!!!!

DH is having a hell of a time with one of his proffs. They could literally keep him from graduating. :mad:To me it seems like personality/ego stuff so how do you fight that and still get a good grade:headache: This is not his best subject so we're not looking for A's just to pass which is an 80 in phd. Thing is my dh has had ALOT of education and never got less than a b+. He started out in religious studies. After three years and some disalusionment with the faithful, he switched to law and psycholgy getting a's. Lsats were a problem and in his humble opinion not worth the trouble so he decided to stick with psych and get a BA in business as backup. If he had taken another semester he would have had 4 degrees bus, psych, history and phylosopy (transfered religious classes to state school) He then got his Masters in social work. He had gotten good grades for 2 yrs in his phd until this proff (two classes in the same type of class). Thats 9 yrs of education without one problem that he couldnt work through and now we are supposed to believe he is too incompitent/lazy to pull a b in this class. I DO NOT BELIEVE THAT! My DH is a wreck. in his heart he knows its not him but yet he is still blaming himself. our whole future and our childrens entire college education rests in the hands of a very difficult person.:sad2: We have a plan to move forward and he plans on meeting the Proff. He has done something very kind for this proff (because he believes in doing the right thing if even for a difficult person:goodvibes)so hopefully that will help. There is really no reason for it to be like this even if he was ligitamately stuggling there a things proffs can do to help students. We know this because my DH has been teaching for 8 yrs at the gradate level. He has mentored many a student that was a good student but having difficulty for one reason or another. Good students can learn difficult subjects with a little guidance. Hopefully the Proff will mentor my DH and not let personality get in the way. I realize for proffs having fully adult students can feel intimidating compaired to young upstarts. But they are all really accomplished adults so shouldnt they be past this kind of thing?

Ok vent over. So stressed I can bearly stand it but gotta hold on 5 weeks and believe it will all be ok.:goodvibes

Sending pain free vibes:goodvibes and pixie dust to allpixiedust:

[brighteyes]

Hi All, I am still around. Just busy planning my October trip!

So, what a few weeks it has been. Over the winter, I have found that I was feeling worse and worse. The medication I was on (amitriptyline) just wasn't doing it and my insomnia got worse. Consequently, the pain got worse. Then my heart started racing. This used to happen from time to time but it was constant. I finally get in to see the Dr, and my pulse was 140!!! Had to go for an emergency ECG and my doctor took me off the meds cold turkey (that has been another challenge, I feel like poopie). I guess it is a rare side effect of the meds after taking them awhile.

Anyhow he puts me on beta blockers which slows down the heart, but makes you MORE tired and now nauseous. So I am sleeping in till noonish and still not feel rested. I have an appointment this tues so I hope he takes me off the blockers and on something else. He suggested Lyrica and I am covered with my insurance.

All this is happening while I plan my trip! Was going to stay onsite, but we found a darling condo cheaper per night than a mod! It is also good as I will need my space for resting. The private lounge pool doesn't hurt either.

So, here is my question. I was diagnosed after my last trip so other than the after park soreness, I was ok. Do you all have any tips in surviving the parks? Thanks again. :banana:

SOrry to hear you are having difficulty on your meds. I too, had a high pulse due to meds. I had to get my heart checked due to it. But Lyrica really was a lifesaver for me. Felt better almost instantly.

In the parks, I walked slow, rested when I needed to and went home when I needed to. Had a long, long, hot, hot shower when I got back home at night and one before I left in the morning.

My biggest tip would be I carried nothing if that is possible. No bag. I had everything I needed in my camera bag or my pockets. I carried my camera bag around my neck, and in there I carried only my lip balm, my key to the world card, a few advil migraines and a few tylenol, a few candies cause my mouth is always dry, and a small travel bottle of sunscreen. With my hands free, it made walking alot better. MY camera bag was a small one with an extra compartment at front I guess for batteries, etc. I carried one water bottle with me on a mickey carbineer?? you know those little clip things, I got it in the park. this was attached to my hip. My son carried his water bottle and that is all we brought with us.

I also had a pair of sport flip flops which had a huge gel cushy sole and a pair of good sneakers. I alternated wearing these each day. I love my flip flops but my feet need the sneakers. I also sprayed deoderant on the bottoms of my feet so they wouldn't sweat and cause blisters.

I left Mickey's Very Merry christmas Party after two hours because my feet and body said that was enough for me. Thank God my DS understood. We never went commando, but picked a few rides for sure that we wanted to do each day and after that the rest was gravy. No plan really - just chose what we wanted to do and did it, and if we went home early we went home. No biggie, then my DS just swam in the resort pool. We are night owls so getting up early didn't always happen either. We missed an early morning adr cause we totally didn't hear the wake up call. So I just called reservations and got another adr for lunch.

That's about all I can think of really for my second trip which was much more difficult than the first. I just really had to go with the flow and listen to my body. I had a huge flair when I came home, but it was worth it. I also either had food poisoning while I was there, or had a serious case of a tummy bug, but was confined to the room for about 48 hours when I could eat nothing and not be far from the washroom. :eek: So my son and I just watched all kinds of tv. He discovered Jerry Springer :happytv: :scared: Feel better soon!

[brighteyes]

Hi All, I am still around. Just busy planning my October trip!

So, what a few weeks it has been. Over the winter, I have found that I was feeling worse and worse. The medication I was on (amitriptyline) just wasn't doing it and my insomnia got worse. Consequently, the pain got worse. Then my heart started racing. This used to happen from time to time but it was constant. I finally get in to see the Dr, and my pulse was 140!!! Had to go for an emergency ECG and my doctor took me off the meds cold turkey (that has been another challenge, I feel like poopie). I guess it is a rare side effect of the meds after taking them awhile.

Anyhow he puts me on beta blockers which slows down the heart, but makes you MORE tired and now nauseous. So I am sleeping in till noonish and still not feel rested. I have an appointment this tues so I hope he takes me off the blockers and on something else. He suggested Lyrica and I am covered with my insurance.

All this is happening while I plan my trip! Was going to stay onsite, but we found a darling condo cheaper per night than a mod! It is also good as I will need my space for resting. The private lounge pool doesn't hurt either.

So, here is my question. I was diagnosed after my last trip so other than the after park soreness, I was ok. Do you all have any tips in surviving the parks? Thanks again. :banana:

SOrry to hear you are having difficulty on your meds. I too, had a high pulse due to meds. I had to get my heart checked due to it. But Lyrica really was a lifesaver for me. Felt better almost instantly.

In the parks, I walked slow, rested when I needed to and went home when I needed to. Had a long, long, hot, hot shower when I got back home at night and one before I left in the morning.

My biggest tip would be I carried nothing if that is possible. No bag. I had everything I needed in my camera bag or my pockets. I carried my camera bag around my neck, and in there I carried only my lip balm, my key to the world card, a few advil migraines and a few tylenol, a few candies cause my mouth is always dry, and a small travel bottle of sunscreen. With my hands free, it made walking alot better. MY camera bag was a small one with an extra compartment at front I guess for batteries, etc. I carried one water bottle with me on a mickey carbineer?? you know those little clip things, I got it in the park. this was attached to my hip. My son carried his water bottle and that is all we brought with us.

I also had a pair of sport flip flops which had a huge gel cushy sole and a pair of good sneakers. I alternated wearing these each day. I love my flip flops but my feet need the sneakers. I also sprayed deoderant on the bottoms of my feet so they wouldn't sweat and cause blisters.

I left Mickey's Very Merry christmas Party after two hours because my feet and body said that was enough for me. Thank God my DS understood. We never went commando, but picked a few rides for sure that we wanted to do each day and after that the rest was gravy. No plan really - just chose what we wanted to do and did it, and if we went home early we went home. No biggie, then my DS just swam in the resort pool. We are night owls so getting up early didn't always happen either. We missed an early morning adr cause we totally didn't hear the wake up call. So I just called reservations and got another adr for lunch.

That's about all I can think of really for my second trip which was much more difficult than the first. I just really had to go with the flow and listen to my body. I had a huge flair when I came home, but it was worth it. I also either had food poisoning while I was there, or had a serious case of a tummy bug, but was confined to the room for about 48 hours when I could eat nothing and not be far from the washroom. :eek: So my son and I just watched all kinds of tv. He discovered Jerry Springer :happytv: :scared:

Hope this helps a little. Feel better soon.

[brighteyes]

In my op of how to survive the parks I stressed staying on monorail if possible. The condo for so many reason will be great especially since the monorail is down 7hrs a day:scared1: for who knows how long due to the construction. Construction and fibro mmmmmm:scared1:


As my gradma used to say "I'm too pooped to pop" that about sums me up.


If you dont mind I'd like some major pixie dust from you all the next 5 weeks!!!!!

DH is having a hell of a time with one of his proffs. They could literally keep him from graduating. :mad:To me it seems like personality/ego stuff so how do you fight that and still get a good grade:headache: This is not his best subject so we're not looking for A's just to pass which is an 80 in phd. Thing is my dh has had ALOT of education and never got less than a b+. He started out in religious studies. After three years and some disalusionment with the faithful, he switched to law and psycholgy getting a's. Lsats were a problem and in his humble opinion not worth the trouble so he decided to stick with psych and get a BA in business as backup. If he had taken another semester he would have had 4 degrees bus, psych, history and phylosopy (transfered religious classes to state school) He then got his Masters in social work. He had gotten good grades for 2 yrs in his phd until this proff (two classes in the same type of class). Thats 9 yrs of education without one problem that he couldnt work through and now we are supposed to believe he is too incompitent/lazy to pull a b in this class. I DO NOT BELIEVE THAT! My DH is a wreck. in his heart he knows its not him but yet he is still blaming himself. our whole future and our childrens entire college education rests in the hands of a very difficult person.:sad2: We have a plan to move forward and he plans on meeting the Proff. He has done something very kind for this proff (because he believes in doing the right thing if even for a difficult person:goodvibes)so hopefully that will help. There is really no reason for it to be like this even if he was ligitamately stuggling there a things proffs can do to help students. We know this because my DH has been teaching for 8 yrs at the gradate level. He has mentored many a student that was a good student but having difficulty for one reason or another. Good students can learn difficult subjects with a little guidance. Hopefully the Proff will mentor my DH and not let personality get in the way. I realize for proffs having fully adult students can feel intimidating compaired to young upstarts. But they are all really accomplished adults so shouldnt they be past this kind of thing?

Ok vent over. So stressed I can bearly stand it but gotta hold on 5 weeks and believe it will all be ok.:goodvibes

Sending pain free vibes:goodvibes and pixie dust to allpixiedust:

Tigg, so sorry you and DH are going through all this. :hug: I will for sure send pixie dust your way and hope that you get through this. Let us know how it goes and I am sure your DH will find a way to get through this. :hug::hug::hug: I had a difficult prof too, and I was so angered and upset but then I just ignored him (his bad attitude and decided I wasn't going to let a jerk get in the way of my learning) and somehow he got over his attitude. I still had resentement for him but did not let it show. Uggg, what a mess for your DH to be in. pixiedust:pixiedust:

[mommasita]

tiggspring :grouphug: That sounds awful. I hope it all works out for your family. He has come so far and worked so hard.:grouphug::flower3: You have all the pixie dust in the world, and then some :wizard::wizard::wizard::wizard::wizard::wizard:

[tiggspring]

Tigg, so sorry you and DH are going through all this. :hug: I will for sure send pixie dust your way and hope that you get through this. Let us know how it goes and I am sure your DH will find a way to get through this. :hug::hug:: I had a difficult prof too, and I was so angered and upset but then I just ignored him (his bad attitude and decided I wasn't going to let a jerk get in the way of my learning) and somehow he got over his attitude. I still had resentement for him but did not let it show. Uggg, what a mess for your DH to be in. pixiedust:pixiedust:

tiggspring :grouphug: That sounds awful. I hope it all works out for your family. He has come so far and worked so hard.:grouphug::flower3: You have all the pixie dust in the world, and then some :wizard::wizard::wizard::wizard::wizard::


Thanks guys:flower3: Keep that pixie dust flowing it seems to be working!!

Warning this is long..didnt realize how uch I needed to vent or how lonely I was til I started writing

I totally freeked after my last post because I finally saw proff comments and there were so many it was overwhelming:scared1:. I tried to be supportive by not saying anything as DH was sooooo stressed. Not sleeping and all sorts of physical aches pains from stress.

Then DH saw his Teaching Asst. and learned he was smack dab in middle of class. OMG I cant imagine what some of the others got returned:sad2: Classmates not even emailing each other anymore they are so stressed. He also learned that he understood the material fine but did not know the "rules" of how to present it. Since he didnt follow the rules most everything was wrong:scared: Proff thinks they should already know these "rules" so doesnt teach them or comments on them in a fashon that you can decern they are important. In short its a completly different kind of writing which no one outside the elite circles uses or knows. DH met with Proff too and it was a good meeting because he finally knew what to ask. Ask the right questions and you get better answers. Thank God for the TA!:goodvibes DH still very stressed but feels he can pull a B since he already submited his 2nd of 4 papers before he knew the secret, he doubts he can do better. At this point a passing grade of B will feel like an A+:cheer2:

Stress causing me to flare and forget about losing weight:sad2: My DD13 has chosen now as the time to act up and I may need to pull her class trip which is making me soooo sad. But when you tell a 13 yr old that you might not let them go and you get REALLY MOM...REALY? in that tone of your not going to do that, you are pushed to do it:sad2: We needed new tires on van so now we are financially really close to scaling back our vaca and nixing universal stuios. I've got a plan to keep it in here's hoping it works:rolleyes1

I'm hoping to get back on track monday and lose 10 of the 30 lbs I wanted to lose by June. Things are getting better. I think we are just tired of this long journey. which has become unecessarily hard for DH and his classmates.

I know many of you are dealling with serious flares and ill family members so we are lucky. The problems that we have will end in 5 weeks and the worst we are looking at is a scaled back Dream vaction. Thats really not a problem is it? Just tired and wish I had the capasity to cope the way I did pre Fibro. You are all in my thoughts.pixiedust:

Sending Pain free vibes:goodvibes and Pixie dust to allpixiedust:

[tiggspring]

Well as you can see I'm still awake:upsidedow

I feeling much better though. Spent some time on youtube looking at Dream tours and aquaduck rides:goodvibes Put my issues in perspective. My FE thread is about to close and taking to all these DREMAING Dis'er isd really getting me excited. We have a plane to meet at a great spot for the Bon voyage party and it will even land us on a web cam from shore that a member knew about and is copying...soooo cool:dance3:

[tiggspring]

ummmm ment to say plan to meet not plane to meet:lmao:

I know the ship is HUGE but really dont want a plane landing on deck;)

[mommasita]

Well as you can see I'm still awake:upsidedow

I feeling much better though. Spent some time on youtube looking at Dream tours and aquaduck rides:goodvibes Put my issues in perspective. My FE thread is about to close and taking to all these DREMAING Dis'er isd really getting me excited. We have a plane to meet at a great spot for the Bon voyage party and it will even land us on a web cam from shore that a member knew about and is copying...soooo cool:dance3:

I didn't know which message to quote, so I went with this one.

I am glad things seems a little better, and am sure he will pull of a passing grade. I hear you LOUD and clear, as my DD will be 13 this month :sad2::scared::scared1:, and you are right, as hard as it is, we have to go through with it (i'm HORRIBLE at that though ;) )or they realize so quickly what they get away with.

I'm sorry you are going through such a rough patch. I hope the sun comes out for you and things start to go smoother...It seems when it rains it pours, but it has to stop at some point..

Sending more pixie dust :wizard::wizard:

[mommasita]

HI everyone.:)

I have been having a lousy time of it. Just lousy. I don't think I was the feel sorry for me kind, but I AM NOW. Just so much with losing the job, and thinking I was feeling better and at least find a part time something. Now I wonder how I could do it. Although $ wise, we NEED to do it.

Well for about 2 weeks I can hardly walk, the pain is incredible, and if I do, I pay for it for DAYS. I can't remember my own cell phone number, where I parked the car, etc, etc. It gets worse, and it just is really getting me down. I have a 7 hour memory day in May, and I am scared. THere I said it, I am scared. :( Sorry about all this, I guess I just need to vent. I am scared as each day I am losing more memory. The SIMPLIEST easiest of things. If I told you all, Id be afraid you would think i am crazy. It is been rough.

Well, enough of me. I wonder how you are all doing so very often. Love and gentle hugs to you my friends:grouphug::flower3:

[tiggspring]

HI everyone.:)

I have been having a lousy time of it. Just lousy. I don't think I was the feel sorry for me kind, but I AM NOW. Just so much with losing the job, and thinking I was feeling better and at least find a part time something. Now I wonder how I could do it. Although $ wise, we NEED to do it.

Well for about 2 weeks I can hardly walk, the pain is incredible, and if I do, I pay for it for DAYS. I can't remember my own cell phone number, where I parked the car, etc, etc. It gets worse, and it just is really getting me down. I have a 7 hour memory day in May, and I am scared. THere I said it, I am scared. :( Sorry about all this, I guess I just need to vent. I am scared as each day I am losing more memory. The SIMPLIEST easiest of things. If I told you all, Id be afraid you would think i am crazy. It is been rough.

Well, enough of me. I wonder how you are all doing so very often. Love and gentle hugs to you my friends:grouphug::flower3:

Fellow crazy here:lmao:

I feel your pain my memory has been HORRIBLE:eek: My ds has switched from cub scouts to boy scouts. His activitiy leve has quardrupled!:scared1: Two weeks ago I spent two hours in a church parking lot watching the boys and hanging with my daughters when I realized a parent had mentioned a parent meeting when she dropped off her son. Took me an hour to realize I was missing the meeting and when I tried to go I couldnt get in. I got very upset and had a hard time not crying. My dd13 couldnt understand why. I tried to explain that I used to work two jobs and take msw classes without using a planner much if at all. now I cant even manage a 10 year old boys scout schedule:sad2: Tonight I talk to one of the leaders re my helping with badges. I just cant do it. With cubscouts I could it was basic and no pressure. Bscouts has a time limit for completing badges and it very specific. I will mess it up and some scout will lose a badge maybe even one vital for eagle scout. I cant do that so now I have to walk in to somone I just met and admit just how dumb my fibro brain has gotten. Oh and last night I realized my DD7 girls scout trip is friday not next week spent night trying to find somewhere for my ds to go while my DH travels back from cleaveland. uggg.

You are definatley not alone. It may be time to admit learning a new job is not realistic. Its bad enough managing the pain, fatigue for a job. New bosses dont like to accomodate for these things and without accrued sick time many fire for a day out. Add memory issues and well its tough. You are on dissability right? You can work part time and collect but I would suggest focusing on a job you could do from home and learning new ways to save. I look at that as my job. Up to $5600 on food and gas not to mention clothes etc I'm probably at 9000 this year. I would have to work 17hrs a week at my old job (taking out taxes) to earn that much. If
I'm thrown by and extra 3hrs of scouts how on earth could I work even 17 hrs forget 20 or 40. Look at all the costs of working. taxes, meals out when too tired or out late, commuting cost, clothing costs, money you can spend time saving if you felt a bit better and medical expenses during those crashes. Beside being the right thing for your body it might be the best thing for your budget. Also remember that disability is tired to your income. If you have to take a lesser job and then on top not work very much you may significantly decrease your benifits. That happened to me. I took a 20pect pay cut trying to manage my fibro that really hurt when I went out on ssi.

Things to think about.

stinks all the way around. You have every right to be upset.

Pain free vibes:goodvibes and pixie dust to allpixiedust:

[onnawufei]

Augh! I feel so bad, I keep introducing myself and then falling off the face of the earth. But things change so easily, I feel like I have to introduce myself all over again. I'll try not to disappear this time!

I think I'd recently started Lyrica the last time I posted, and I'm still doing pretty well on it. Honestly things haven't been too bad overall. On most days I'd say I'm a 2 or 3 on a pain scale of 1 - 10, which I consider to be not too bad. I have my bad days (today was one of them) and I have both 50mg and 100mg tramadol for those days. I'm using an iPhone app to track my pain levels, and since February I've only had one "I AM MADE OF HURT, KILL ME NOOOOOOW!" day.

Since being diagnosed my doctor has been telling me to exercise, and it only took me three years or so to actually listen. I started dieting and exercising a month and a half ago and I've lost 11 pounds (I gained a fair bit after getting on Lyrica), but I'm not sure if my fibro feels any better. At the very least I'll look better in my Disney pictures, and I can tell the doctor that yes, I am exercising. I even bought a fitbit, which is awesome since besides tracking my activity it tracks my sleep too. Man, I wake up a lot during the night!

Our next Disney trip is this October. Both the hubs and I love Halloween at Disney, and since we got married on Halloween at Disney it seems pretty fitting. Hopefully this year I'll be able to handle all the walking/standing better. I hate that no matter how much I've exercised and how much stronger I've gotten, a bad fibro day sends that all out the window.

Okay, I'll stop babbling now. :rolleyes1

[tiggspring]

Augh! I feel so bad, I keep introducing myself and then falling off the face of the earth. But things change so easily, I feel like I have to introduce myself all over again. I'll try not to disappear this time!

I think I'd recently started Lyrica the last time I posted, and I'm still doing pretty well on it. Honestly things haven't been too bad overall. On most days I'd say I'm a 2 or 3 on a pain scale of 1 - 10, which I consider to be not too bad. I have my bad days (today was one of them) and I have both 50mg and 100mg tramadol for those days. I'm using an iPhone app to track my pain levels, and since February I've only had one "I AM MADE OF HURT, KILL ME NOOOOOOW!" day.

Since being diagnosed my doctor has been telling me to exercise, and it only took me three years or so to actually listen. I started dieting and exercising a month and a half ago and I've lost 11 pounds (I gained a fair bit after getting on Lyrica), but I'm not sure if my fibro feels any better. At the very least I'll look better in my Disney pictures, and I can tell the doctor that yes, I am exercising. I even bought a fitbit, which is awesome since besides tracking my activity it tracks my sleep too. Man, I wake up a lot during the night!

Our next Disney trip is this October. Both the hubs and I love Halloween at Disney, and since we got married on Halloween at Disney it seems pretty fitting. Hopefully this year I'll be able to handle all the walking/standing better. I hate that no matter how much I've exercised and how much stronger I've gotten, a bad fibro day sends that all out the window.

Okay, I'll stop babbling now. :rolleyes1

Congrats on the exersize!:cheer2::cheer2:

I managed about 6 weeks enough to feel a real change in my strength:thumbsup2 then hit a fatigue patch and exersize was inducing migraines:headache: so I had to stop. longest run in many years though. I can fight through pain but when I'm falling asleep sitting up...well exersize is out.

Dont worry about poping in/out. This whole thread has gone quiet for a few months at a time then comes back to life. Its sad when it gets so quiet because I've come to really love hearing how everyone is doing rejoicing when you guys feel good and glad to offer support when it tough. At least I can help a bit here.:grouphug:

[mommasita]

onnawufei. Congrats that is a great accomplishment..

Tiggs. I am on my work disability, and seeing as how they let me go, I have NO clue how longer this will be. I am worried because as it is monthly, she may call and say ok April was IT.. KWIM? She told me she would be in touch with me. I sit and I wait..

You are right though. I thought NO problem, I can do something, and I am soooo soooo down on myself. I mean I know it is not my fault, but I see it getting worse daily, and today I was lost on a road I have driven for 17 years. Not completely lost, but I didn't know if my house was left or right, and then all of a sudden I knew...:worried:... I am glad I have 2 upcoming appointments ...

I feel for you so much. I am sure you know that. I have been there and it is not an easy feeling. My DH is often gone for extended periods, and It falls on me, and well, that is great when I can, but not so much when it isn't.. Chin up..

I think this is the worst for me with the pain. The memory for sure. I seem to be hearing a lot of the same around here, on FB, and in my daily life..

WEll, busy 2 days. My youngest turns 13 tomorrow, so family supper to do, and then she is coming home with a bunch of friends Fri after school for pizza and movies, and some are sleeping over. DH works till midnight, and this used to be what I loved to do. Plan these parties, fix the house. Now, I am DREADING IT.... I can't let her know this, it is a special day.

Well I miss you all and send hugs and love.

[tiggspring]

pixiedust:onnawufei. Congrats that is a great accomplishment..

Tiggs. I am on my work disability, and seeing as how they let me go, I have NO clue how longer this will be. I am worried because as it is monthly, she may call and say ok April was IT.. KWIM? She told me she would be in touch with me. I sit and I wait..

You are right though. I thought NO problem, I can do something, and I am soooo soooo down on myself. I mean I know it is not my fault, but I see it getting worse daily, and today I was lost on a road I have driven for 17 years. Not completely lost, but I didn't know if my house was left or right, and then all of a sudden I knew...:worried:... I am glad I have 2 upcoming appointments ...

I feel for you so much. I am sure you know that. I have been there and it is not an easy feeling. My DH is often gone for extended periods, and It falls on me, and well, that is great when I can, but not so much when it isn't.. Chin up..

I think this is the worst for me with the pain. The memory for sure. I seem to be hearing a lot of the same around here, on FB, and in my daily life..

WEll, busy 2 days. My youngest turns 13 tomorrow, so family supper to do, and then she is coming home with a bunch of friends Fri after school for pizza and movies, and some are sleeping over. DH works till midnight, and this used to be what I loved to do. Plan these parties, fix the house. Now, I am DREADING IT.... I can't let her know this, it is a special day.

Well I miss you all and send hugs and love.

I'm sorry sorry it has gotten worse the past few weeks. I know how frightning the driving thing can be. the week that I left work for good dozen times I drove around a rotery about a dozen time trying to figure out where to turn off. Thing is I drove through that spot at least 2-4x daily for 7 years:crazy2: I stoped driving not long after that for more than 5 years. Between the memory stuff and the visual distortions I felt it was too dangerous. Drs always said it was ok but I thought that was crazy. The ggod news is it should get better if you dont do what I did which was put too much pressure on myself, not pace myself enough and most importantly letting the Dr's mess with me too much for too long. Thats what led to being bedridden 13 Dr and 20+ meds in two years. If you can ride out the bad times and not panic that it will kill you (felt that way sometimes) and that it will last forever (it wont) then you will bounce back to a more managable state. Its you bodies way of saying STOP you need to take car of yourself. In this case you are probably worrying too much about working which I know is not easy to let go of. I'm having same problem here with money issues and DH classes. I feel like crap and I know thats why just cant get a handle on it.

As far as disability IMHO you need to contact a lawyer. Insurance co and business need to do what is best for them and if they can find a way to sign away your rights they will. You may be just fine and not know it. When I went out on TDI for origonal injury that led to FMS my company tried to get me to work by offering a alternative job in the kitchen where patients couldnt hurt me. The catch was I was advised not to lift anything above 5lbs by Dr. and a industrial size can of fruit etc. weighs more than that. They tried to convince me they were on my side and helping. If I had done what they said I would have lost TDI because I would have violated DRs orders which would allow them to deem me fit to work. Luckily my DH who worked with me had warned me that they had done it before so I refused with a Drs note. They were a good company to work for but they had risk managers who's sole job was to figue out how to get out of claims. You need somone whos sole jobe is to care for you. You just might be worrying for nothing.

Enjoy your DD's party. I know the dread you feel and the guilt regarding the party. Felt the same way back in october when DD turned 7.

Hang in there it will get better:hug:

Pain free vibes:goodvibes pixie dust to allpixiedust:

[brighteyes]

Hi All again!! I have been reading but not posting. I have lots of changes some good and bad! But am off to work so will come back this evening and post!! I am sorry for all your pain and struggles. Pixie dust to you all. Although I don't come here often, I do think of you. Work is over for me in a couple of months. So maybe then Iwill be around more.

Stephanie

[Corpsebride]

a friend of mine has suffered from Fibromyalgia for years, and doctors have even told her its in her mind. She finally came across a nutritionist who suggested Astaxanthin . I guess it is amazing for inflammation. She also takes magnesium and Tonalin / CLA. She actually smiles now. She told me that she feels a lot lot better. I just came across this page and I thought you all who suffer so badly with this might want to know.
All the very best to you all!:goodvibes

[tiggspring]

a friend of mine has suffered from Fibromyalgia for years, and doctors have even told her its in her mind. She finally came across a nutritionist who suggested Astaxanthin . I guess it is amazing for inflammation. She also takes magnesium and Tonalin / CLA. She actually smiles now. She told me that she feels a lot lot better. I just came across this page and I thought you all who suffer so badly with this might want to know.
All the very best to you all!:goodvibes

Thanks! I take alot of suppliments and you are right for many of us they work as well or better than meds. I havent heard of this one so I will definately check it out:thumbsup2

Your friend might want to check out the Dr oz website. A few weeks back there was a show of FMS and they showed how the mri brain scans of FMS patients are abnormal in pain regions. It really helps to get validation after all these years.

[brighteyes]

Hi all, I am off this week so thought I would post.

Onnawufei - congrats on the weight, I too, gained on lyrica as well as other meds. I have lost and gained and am losing again. LOL It is a battle.

Mommasita, don't get too down on yourself. You do have to pace3 yourself, and there will be times that you're brain does not work. Mine really doesn't. There are times when I just can't find words and I am pointing at something saying. "That thing, there..." My DS gets so mad at me. LOL I have looked at appt times and then think they are another time or day and miss them all the while telling someone else when my appt time really is. Just really stupid things. Like wondering where all my money went and how am I gonna pay rent because I have no money in my account. (Because I transferred it to my savings to make sure I still have it) Yes, that's me! Can't remember what the heck I do or say from one minute to the next.

So I just wanted to fill you all in on something. For the past at least three years my shoulders, especially my left, has been hurting me and causing me pain. IT was to the point where a trainer told me to get it checked because some days I could not even move my whole arm or bend my elbow. My shoulder was sore and very sore if touched. I never injured it, It was just hurting one day and attributed it to fibro.

Well three years later, I finally cannot take it anymore and went to the dr and asked for tests. Almost every day it hurts me, and sometimes my right, which i thought strange considering I am right handed. So Ithought my right shoulder should hurt more from fibro when doing things. It's not like I strain myself or do anything that requires a lot of strenght anyways because it always hurt and I didn't want to make it worse.

So I went to get it checked because my DS and I joined a family gym on dr orders and he needs to get out and be active. Wanting to know what I should and shouldn't do for excercise prompted me to go. So now I find out in my left shoulder I have calcium on the tendon of the rotator cuff and the right shoulder I have bursitis. What I am trying to say is - If you have pain that continues for a long period of time and gets worse, don't wait three years like I did thinking it's just fibro. I cannot tell you how many times I have been told that about various other t hings I have got checked and I got so sick of hearing it. I thought this would be the same. It wasn't and now my options are - 1.) Cortisone injections which cost $$ and may not work and are painful, 2.) physio, or 3) Do Nothing!! Tried that one - it didn't work!! Bottom line, I made it worse and it may not get better now because it's been so long.

My puppy just got spayed today adn I feel so bad for her! Poor baby, she is so sweet just wanting to lay on me.

I also wanted to ask for your positive thoughts for my DS. He is 16 and a sweet boy. He has always been a quiet child but have been noticing the last few years he has been gradually becomng more withdrawn and depressed. I have always had him in counselling and us together at some points. So finally I took him to the hospital on Valentine's Day. They did nto admit him, but set him up right away with a social worker who was beautiful and a godsend. And he finally admitted being depressed. Very depressed. Just no motivation and no enjoyment out of life. He has been seeing a child psychologist who has him on antidepressants. He seemed to be getting a bit better with his mood improving a bit, so I had hope. Now he isn't again. He's up and down. The dr. is watching him and monitoring him b/c he thinks he may be bi-polar as my mom is bi-polar. I am so sad for him. I know every teen has drama but this is more serious. And my heart is breaking for him. All I have ever wanted was for him to be happy and have those fun teen years. He has missed all of that. :( I know the positive side is that he is getting help but I feel it will be a long road for us. He is seeing the dr about his meds but there is a waitlist for counselling.

I am also dreading the future b/c his dad, who has been absent for his whole life, except for two visits when my DS was 5 - ( I broke up with him when I was pregnant) has been caught by the government for not paying child support. Looks like he finally realized it's not going away and maybe start paying now. That's what his lawyer says anyways. But now I know my DS has hopes that his dad will want to see him. What if he doesn't?? That will break him! And if he does see him, all t hose years of all those feelings of his dad being absent will come out and I don't know if DS can handle those feelings he will surely have. He is already dealing with enough right now. I am feeling so sick and so heartbroken for my dear sweet DS. He is such a beautiful boy, he doesn't even realize it. :( So please - keep him in your prayers, please. Thank You.

Hope you all hang in there too, and feel better. Sending you all my positive thoughts and pixie dust.

Brighteyes.

[tiggspring]

Hi all, I am off this week so thought I would post.

Onnawufei - congrats on the weight, I too, gained on lyrica as well as other meds. I have lost and gained and am losing again. LOL It is a battle.

Mommasita, don't get too down on yourself. You do have to pace3 yourself, and there will be times that you're brain does not work. Mine really doesn't. There are times when I just can't find words and I am pointing at something saying. "That thing, there..." My DS gets so mad at me. LOL I have looked at appt times and then think they are another time or day and miss them all the while telling someone else when my appt time really is. Just really stupid things. Like wondering where all my money went and how am I gonna pay rent because I have no money in my account. (Because I transferred it to my savings to make sure I still have it) Yes, that's me! Can't remember what the heck I do or say from one minute to the next.

So I just wanted to fill you all in on something. For the past at least three years my shoulders, especially my left, has been hurting me and causing me pain. IT was to the point where a trainer told me to get it checked because some days I could not even move my whole arm or bend my elbow. My shoulder was sore and very sore if touched. I never injured it, It was just hurting one day and attributed it to fibro.

Well three years later, I finally cannot take it anymore and went to the dr and asked for tests. Almost every day it hurts me, and sometimes my right, which i thought strange considering I am right handed. So Ithought my right shoulder should hurt more from fibro when doing things. It's not like I strain myself or do anything that requires a lot of strenght anyways because it always hurt and I didn't want to make it worse.

So I went to get it checked because my DS and I joined a family gym on dr orders and he needs to get out and be active. Wanting to know what I should and shouldn't do for excercise prompted me to go. So now I find out in my left shoulder I have calcium on the tendon of the rotator cuff and the right shoulder I have bursitis. What I am trying to say is - If you have pain that continues for a long period of time and gets worse, don't wait three years like I did thinking it's just fibro. I cannot tell you how many times I have been told that about various other t hings I have got checked and I got so sick of hearing it. I thought this would be the same. It wasn't and now my options are - 1.) Cortisone injections which cost $$ and may not work and are painful, 2.) physio, or 3) Do Nothing!! Tried that one - it didn't work!! Bottom line, I made it worse and it may not get better now because it's been so long.

My puppy just got spayed today adn I feel so bad for her! Poor baby, she is so sweet just wanting to lay on me.

I also wanted to ask for your positive thoughts for my DS. He is 16 and a sweet boy. He has always been a quiet child but have been noticing the last few years he has been gradually becomng more withdrawn and depressed. I have always had him in counselling and us together at some points. So finally I took him to the hospital on Valentine's Day. They did nto admit him, but set him up right away with a social worker who was beautiful and a godsend. And he finally admitted being depressed. Very depressed. Just no motivation and no enjoyment out of life. He has been seeing a child psychologist who has him on antidepressants. He seemed to be getting a bit better with his mood improving a bit, so I had hope. Now he isn't again. He's up and down. The dr. is watching him and monitoring him b/c he thinks he may be bi-polar as my mom is bi-polar. I am so sad for him. I know every teen has drama but this is more serious. And my heart is breaking for him. All I have ever wanted was for him to be happy and have those fun teen years. He has missed all of that. :( I know the positive side is that he is getting help but I feel it will be a long road for us. He is seeing the dr about his meds but there is a waitlist for counselling.

I am also dreading the future b/c his dad, who has been absent for his whole life, except for two visits when my DS was 5 - ( I broke up with him when I was pregnant) has been caught by the government for not paying child support. Looks like he finally realized it's not going away and maybe start paying now. That's what his lawyer says anyways. But now I know my DS has hopes that his dad will want to see him. What if he doesn't?? That will break him! And if he does see him, all t hose years of all those feelings of his dad being absent will come out and I don't know if DS can handle those feelings he will surely have. He is already dealing with enough right now. I am feeling so sick and so heartbroken for my dear sweet DS. He is such a beautiful boy, he doesn't even realize it. :( So please - keep him in your prayers, please. Thank You.

Hope you all hang in there too, and feel better. Sending you all my positive thoughts and pixie dust.

Brighteyes.

Oh Bright you have been going through so much for sooooo long. You mom, grandma...fibro and now your son:grouphug::hug::grouphug:

Sending a ton of hugs and pixie dustpixiedust: your way from PA

[brighteyes]

Oh Bright you have been going through so much for sooooo long. You mom, grandma...fibro and now your son:grouphug::hug::grouphug:

Sending a ton of hugs and pixie dustpixiedust: your way from PA

Thanks Tigg!! My DS needs some pixie dust -- I think we need a trip to get some Mickey Hugs. I just can't lose hope that he will come out of this... I am a positive person, but this is really difficult.

I've been thinking of you tigg! Are things better for your DH???

[brighteyes]

eek!! Sorry for the large novel. Guess I needed to vent!!!! WOW!

[onnawufei]

You are right though. I thought NO problem, I can do something, and I am soooo soooo down on myself. I mean I know it is not my fault, but I see it getting worse daily, and today I was lost on a road I have driven for 17 years. Not completely lost, but I didn't know if my house was left or right, and then all of a sudden I knew...:worried:... I am glad I have 2 upcoming appointments ...I've never learned to drive (I'm afraid to), and now the idea scares me even more than it did before. I know I'd end up zoning out or blanking out and who knows what that could lead to. It drives me crazy when I try to explain this to people and they insist that no, if I was driving I'd be more focused blah blah blah. Um... no? I know myself pretty well. ... Ooh that sorta turned into a rant there didn't it? Sorry about that.

Thanks! I take alot of suppliments and you are right for many of us they work as well or better than meds. I havent heard of this one so I will definately check it out:thumbsup2I was going to ask my doctor about supplements the last time I was there, but I forgot. That's almost funny considering one of the things I was hoping to get a recommendation on was something to help my memory. :laughing:

Mommasita, don't get too down on yourself. You do have to pace3 yourself, and there will be times that you're brain does not work. Mine really doesn't. There are times when I just can't find words and I am pointing at something saying. "That thing, there..." My DS gets so mad at me. LOL That's one of the things that bugs me the most about this whole fibro nonsense. I started writing stories when I was seven and writing has always been a big part of my life. So to suddenly have my brain turn to pudding and completely lose words kills me. I still try to write, but I know I'm not as good as I used to be. Luckily the friends I have who read my stories cut me a little slack. (Well I think they do anyway.)


I also wanted to ask for your positive thoughts for my DS. He is 16 and a sweet boy. He has always been a quiet child but have been noticing the last few years he has been gradually becomng more withdrawn and depressed. I have always had him in counselling and us together at some points. So finally I took him to the hospital on Valentine's Day. They did nto admit him, but set him up right away with a social worker who was beautiful and a godsend. And he finally admitted being depressed. Very depressed. Just no motivation and no enjoyment out of life. He has been seeing a child psychologist who has him on antidepressants. He seemed to be getting a bit better with his mood improving a bit, so I had hope. Now he isn't again. He's up and down. The dr. is watching him and monitoring him b/c he thinks he may be bi-polar as my mom is bi-polar. I am so sad for him. I know every teen has drama but this is more serious. And my heart is breaking for him. All I have ever wanted was for him to be happy and have those fun teen years. He has missed all of that. :( I know the positive side is that he is getting help but I feel it will be a long road for us. He is seeing the dr about his meds but there is a waitlist for counselling. Ugh, that's awful! :sad1: Sending lots of good happy vibes his way! It's great that you're so supportive though. I know a lot of parents sometimes like to bury their heads in the sand, thinking that if something is wrong with their child it would reflect badly on them... or something. He's very lucky to have you.

[onnawufei]

Oops, I forgot to add my own update. :eek:

My diet and exercise has hit a little snag this week. First off it's lady's TMI week (hopefully that isn't really TMI, if so I apologize), then my husband found out that the position he's been hoping to get for the past few years might never be his all because he was never in the military, which of course upset him, which upset me. Any time he ends up depressed I end up depressed and in pain, which then makes him feel bad, which makes me feel bad for making him feel bad, and at that point I just have to laugh at how ridiculous it all is. Ah the power of love~. But just when the week was maybe looking up one of my lizards died out of nowhere. We didn't see it coming at all. Ryan was asleep when I found him too, so I just bawled my eyes out while trying to figure out what I should do with him. The idea of just leaving him there until the next morning didn't sit right with me. Ugh. I'm feeling better now, though that may have something to do with being medicated.:rolleyes1

On a better note, I think we're going to Myrtle Beach this weekend to go to Alligator Adventure and the Ripley's Aquarium. They have a new dinosaur exhibit that I'm psyched to see. And Alligator Adventure now has bats! ... Clearly it's the little things. At the very least it'll get me walking.

[tiggspring]

Thanks Tigg!! My DS needs some pixie dust -- I think we need a trip to get some Mickey Hugs. I just can't lose hope that he will come out of this... I am a positive person, but this is really difficult.

I've been thinking of you tigg! Are things better for your DH???

THanks

Well we will know more tonight. DH proff finally got mid terms in just in time for the final class. Didnt help much with final though since it is already in. I have to admit I'm really anxious:eek: Maybe the kidness he showed her will limit her need to make him feel small. NEED LOTS OF PIXIE DUST!

[tiggspring]

Oops, I forgot to add my own update. :eek:

My diet and exercise has hit a little snag this week. First off it's lady's TMI week (hopefully that isn't really TMI, if so I apologize), then my husband found out that the position he's been hoping to get for the past few years might never be his all because he was never in the military, which of course upset him, which upset me. Any time he ends up depressed I end up depressed and in pain, which then makes him feel bad, which makes me feel bad for making him feel bad, and at that point I just have to laugh at how ridiculous it all is. Ah the power of love~. But just when the week was maybe looking up one of my lizards died out of nowhere. We didn't see it coming at all. Ryan was asleep when I found him too, so I just bawled my eyes out while trying to figure out what I should do with him. The idea of just leaving him there until the next morning didn't sit right with me. Ugh. I'm feeling better now, though that may have something to do with being medicated.:rolleyes1

On a better note, I think we're going to Myrtle Beach this weekend to go to Alligator Adventure and the Ripley's Aquarium. They have a new dinosaur exhibit that I'm psyched to see. And Alligator Adventure now has bats! ... Clearly it's the little things. At the very least it'll get me walking.

Sorry about your not so fury friend.:hug:

Just a few disjointed thoughts before I forget..

As far as driving I think you are right to be concerned. Learning anything new is difficult for us add to it zoning out it could be dangerous. I stoped driving for nearly 6yrs for just this reason. I find things I learned before fibro are second nature everthing after its a tough go to remember. That doesnt mean you shouldn't learn just take your time an learn your limitations. I have a plan everytime I go more than 15 min from home as to what I will do if I cant drive. Sometimes I have gotten all the way to where I wanted to go only to have to turn around in parkinglot. On a couple occations DH had to pick me and kids up. Doesnt happen as much now that I can sleep while kids in school.

I totaly hear you on the writing thing. I was a big reader and still have moments where I can edit my DH papers but.....I cant remember what I read now so novels are out:sad2: and I only can edit things I have a background in (luckily for dh we have same psych background and way of thinking of things) other topics I cant remeber unless they are repeated over and over like the news. Total news junkie now.

I too am stressed due to DH. Downside to having a good marriage and being a team is we sometimes sink together;)

Hope you feel better soon.

[brighteyes]

I've never learned to drive (I'm afraid to), and now the idea scares me even more than it did before. I know I'd end up zoning out or blanking out and who knows what that could lead to. It drives me crazy when I try to explain this to people and they insist that no, if I was driving I'd be more focused blah blah blah. Um... no? I know myself pretty well. ... Ooh that sorta turned into a rant there didn't it? Sorry about that.

I was going to ask my doctor about supplements the last time I was there, but I forgot. That's almost funny considering one of the things I was hoping to get a recommendation on was something to help my memory. :laughing:

That's one of the things that bugs me the most about this whole fibro nonsense. I started writing stories when I was seven and writing has always been a big part of my life. So to suddenly have my brain turn to pudding and completely lose words kills me. I still try to write, but I know I'm not as good as I used to be. Luckily the friends I have who read my stories cut me a little slack. (Well I think they do anyway.)


Ugh, that's awful! :sad1: Sending lots of good happy vibes his way! It's great that you're so supportive though. I know a lot of parents sometimes like to bury their heads in the sand, thinking that if something is wrong with their child it would reflect badly on them... or something. He's very lucky to have you.

Oops, I forgot to add my own update. :eek:

My diet and exercise has hit a little snag this week. First off it's lady's TMI week (hopefully that isn't really TMI, if so I apologize), then my husband found out that the position he's been hoping to get for the past few years might never be his all because he was never in the military, which of course upset him, which upset me. Any time he ends up depressed I end up depressed and in pain, which then makes him feel bad, which makes me feel bad for making him feel bad, and at that point I just have to laugh at how ridiculous it all is. Ah the power of love~. But just when the week was maybe looking up one of my lizards died out of nowhere. We didn't see it coming at all. Ryan was asleep when I found him too, so I just bawled my eyes out while trying to figure out what I should do with him. The idea of just leaving him there until the next morning didn't sit right with me. Ugh. I'm feeling better now, though that may have something to do with being medicated.:rolleyes1

On a better note, I think we're going to Myrtle Beach this weekend to go to Alligator Adventure and the Ripley's Aquarium. They have a new dinosaur exhibit that I'm psyched to see. And Alligator Adventure now has bats! ... Clearly it's the little things. At the very least it'll get me walking.

Thanks- Now that DS has told me what's going on, I can be supportive. We used to just argue all the time, and now. not at all. Cause our stupid arguements were not the problem. He was just irritated and not happy at all, so it came out as being arguementative and defensive and rude. I can deal with this now that I know what I am dealing with and WHY he behaved that way.

Regarding driving, Well, Guess who turned LEFT on a RED light??? :rolleyes1:eek::rolleyes2
AND I think there was a red light camera there too. I am waiting for a ticket. Now why on earth would I do that you ask??? Well, let's see - It was late, I was coming home from work, worried about DS, pulled to a stop - knew it was a red light, then somehow, just thought it was green, and after looking both ways for traffic, made my turn. NOw smack in the middle of the intersection (it was a 3 way intersection- with no straight thru facing me - just the red light!!) I realized wt heck am i doing? But mid-turn already so I just kept going. :headache: :drive:

Waiting for my ticket for that dumb and dangerous move. But most of the time I am good. That was really bad.

At work, asking stupid questions on procedures I already know cause I am stressed. My boss asked me not to take any extra shifts cause my mind is just not all there, so it's not only you.

THanks

Well we will know more tonight. DH proff finally got mid terms in just in time for the final class. Didnt help much with final though since it is already in. I have to admit I'm really anxious:eek: Maybe the kidness he showed her will limit her need to make him feel small. NEED LOTS OF PIXIE DUST!

:wizard::wizard:pixiedust:pixiedust:pixiedust:

[tiggspring]

:cool1::cool1:DH got a B- on midterm:cool1::cool1:

One of the wose grades of his life but....enough to pass by the skin of his teeth since a B- in phd land is a B :thumbsup2 Now to pass the final. With his participation grade he should pass no matter what but another B- will garentee it. Just a little more pixie dust please!!! We are alomost there:yay:

Good thing DH ego is not wrapped up in grade just graduating.:thumbsup2

He found out another student who falied with a C took their papers to another Proff completely different department (?) different school but same exact subject and was told You paper is fine I may have used different terminology here or there but thats style its a passing paper!

I've been sending lots of prayers for kindness this proffs way:goodvibes

Hope all is well with you all. So glad to see so many of us back up on the board. I miss you guys when its quiet.:grouphug:

[tiggspring]

Thanks- Now that DS has told me what's going on, I can be supportive. We used to just argue all the time, and now. not at all. Cause our stupid arguements were not the problem. He was just irritated and not happy at all, so it came out as being arguementative and defensive and rude. I can deal with this now that I know what I am dealing with and WHY he behaved that way.

Regarding driving, Well, Guess who turned LEFT on a RED light??? :rolleyes1:eek::rolleyes2
AND I think there was a red light camera there too. I am waiting for a ticket. Now why on earth would I do that you ask??? Well, let's see - It was late, I was coming home from work, worried about DS, pulled to a stop - knew it was a red light, then somehow, just thought it was green, and after looking both ways for traffic, made my turn. NOw smack in the middle of the intersection (it was a 3 way intersection- with no straight thru facing me - just the red light!!) I realized wt heck am i doing? But mid-turn already so I just kept going. :headache: :drive:

Waiting for my ticket for that dumb and dangerous move. But most of the time I am good. That was really bad.

At work, asking stupid questions on procedures I already know cause I am stressed. My boss asked me not to take any extra shifts cause my mind is just not all there, so it's not only you.



:wizard::wizard:pixiedust:pixiedust:pixiedust:

Sending thoughts of a camera malfunction your way:rotfl2:

[brighteyes]

:cool1::cool1:DH got a B- on midterm:cool1::cool1:

One of the wose grades of his life but....enough to pass by the skin of his teeth since a B- in phd land is a B :thumbsup2 Now to pass the final. With his participation grade he should pass no matter what but another B- will garentee it. Just a little more pixie dust please!!! We are alomost there:yay:

Good thing DH ego is not wrapped up in grade just graduating.:thumbsup2

He found out another student who falied with a C took their papers to another Proff completely different department (?) different school but same exact subject and was told You paper is fine I may have used different terminology here or there but thats style its a passing paper!

I've been sending lots of prayers for kindness this proffs way:goodvibes

Hope all is well with you all. So glad to see so many of us back up on the board. I miss you guys when its quiet.:grouphug:

Hey nothing wrong with a B- at all! Congrats to your DH!!!!! :banana::woohoo:

Sending thoughts of a camera malfunction your way:rotfl2:

:rotfl2::badpc:

[mommasita]

brighteyes: Lots of thoughts and more for you and your DS..:hug:

onnawufe; I hope you have a great time, and don't get down on yourself, you are doing great.::yes::

tiggspring; YEAH, that is wonderful :thumbsup2... I am still thinking of you all and everyone on the board.

I have been very inactive lately. Nothing wrong, just you know.. I have my 7 hours of memory testing on Thursday. Anxious for that :rolleyes1, and then next week an appt with my Rheumy.. Nothing much happening aside from that. Dh mentioned giong away (no kids, we have NEVER) for a few days together, I will see where that leads.. They are 16 and 13 now, so I wouldn't feel as guilty.

[SeaSpray]

Hi everyone :wave2:

Sorry I haven't been around in a while. I was away in NJ for almost a month, doing what I could for my niece who had major surgery. Fortunately I felt fairly decent while I was there and I felt good to be able to help her out.

Also I've been bogged down (you know, very limited brain capacity these days :headache: ) getting everything ready for our cruise in 3 weeks. I'll be so happy once we're stepping foot on the ship. Between now and then, all of the details and logistics of travel are on me. :faint:

I've been thinking about all of you. I'm sorry that I can't comment individually right now. :( But I have peeked in on the thread during the last few weeks. I will try and give proper replies to all of you this week. I fell down today (splat!) and I have a feeling that it's going to hurt worse tomorrow. I landed hard on both knees so that is just going to add to my overall pain. blah. Par for the course, right? lol

Anyway, I will finish reading this thread and start to reply. *HUGS* everyone!!! :grouphug:

[tiggspring]

Hi everyone :wave2:

Sorry I haven't been around in a while. I was away in NJ for almost a month, doing what I could for my niece who had major surgery. Fortunately I felt fairly decent while I was there and I felt good to be able to help her out.

Also I've been bogged down (you know, very limited brain capacity these days :headache: ) getting everything ready for our cruise in 3 weeks. I'll be so happy once we're stepping foot on the ship. Between now and then, all of the details and logistics of travel are on me. :faint:

I've been thinking about all of you. I'm sorry that I can't comment individually right now. :( But I have peeked in on the thread during the last few weeks. I will try and give proper replies to all of you this week. I fell down today (splat!) and I have a feeling that it's going to hurt worse tomorrow. I landed hard on both knees so that is just going to add to my overall pain. blah. Par for the course, right? lol

Anyway, I will finish reading this thread and start to reply. *HUGS* everyone!!! :grouphug:

Sorry about the Fall! Take a really long shower:goodvibes

Soo freeked by the cruise date:scared1: Not done shopping yet. our budget is waitning on a big check which always stresses me and I have to be done in two weeks so I can do my two weeks down time. I'm off my meds which of course is making things worse but I know it will pay of in the end:goodvibes. The stress of the last year has made losing weight totally impossible:mad: however I'm hoping to give it a good go these last 3 weeks. DH is finally back:love:. His BP way down this am for first time in 3 years:yay: and he is slowly helping so I'm no longer a solo parent. I keep telling myself that stressing over the trip is GOOD STRESS but my poor fibro body isnt listening:laughing:

Lots of pain free vibes:goodvibes and pixie dust to allpixiedust:

[TLSnell1981]

Oh Tiggspring... I'm nowhere near ready for our cruise. My newborn DGS has had health issues...my new foal as well. I also had hand surgery last week!:upsidedow

Hopefully, everyone is on the mend and all will work out. :goodvibes

[mommasita]

OMG Seaspray, I hope you are ok...

Everything will fall into place for the cruise, somehow it just does. I hope you enjoy it to the fullest! And have some painfree moments.

tiggspring: So glad you hear you are getting some help, and wishing some painfree moments for you also.


Last Thursday I had my ENTIRE day at the memory clinic. HORRIBLE, in a nutshell. I cried like a baby, and felt utterly stupid at most times. I came home and napped for 2 hours, and slept 11 hours that night. I think it was the most work and thinking I have had to do in years, and it did me in.

I filed with the Government for unjust dismissal. What have I got to lose? Nothing, as I have no job anyhow.

THe weather and sun have peeked out this weekend after tons of rain, and I have been sitting enjoying it. I always feel better and happier in the sun...

:grouphug:

[TLSnell1981]

.


Last Thursday I had my ENTIRE day at the memory clinic. HORRIBLE, in a nutshell. I cried like a baby, and felt utterly stupid at most times. I came home and napped for 2 hours, and slept 11 hours that night. I think it was the most work and thinking I have had to do in years, and it did me in.

I filed with the Government for unjust dismissal. What have I got to lose? Nothing, as I have no job anyhow.

THe weather and sun have peeked out this weekend after tons of rain, and I have been sitting enjoying it. I always feel better and happier in the sun...

:grouphug::hug:

[TLSnell1981]

Hi everyone :wave2:

Sorry I haven't been around in a while. I was away in NJ for almost a month, doing what I could for my niece who had major surgery. Fortunately I felt fairly decent while I was there and I felt good to be able to help her out.

Also I've been bogged down (you know, very limited brain capacity these days :headache: ) getting everything ready for our cruise in 3 weeks. I'll be so happy once we're stepping foot on the ship. Between now and then, all of the details and logistics of travel are on me. :faint:

I've been thinking about all of you. I'm sorry that I can't comment individually right now. :( But I have peeked in on the thread during the last few weeks. I will try and give proper replies to all of you this week. I fell down today (splat!) and I have a feeling that it's going to hurt worse tomorrow. I landed hard on both knees so that is just going to add to my overall pain. blah. Par for the course, right? lol

Anyway, I will finish reading this thread and start to reply. *HUGS* everyone!!! :grouphug:

:goodvibespixiedust: & :hug: now, that about covers it. :)

[brighteyes]

Tsnell, Mommasita, and Seaspray: :goodvibespixiedust::grouphug:

I hope you all get ready for your trips. Take it easy and rest up. Pixie dust that you all feel better and get everything done in time, but don't overdo it.

Take care. :goodvibes

[tiggspring]

Well guys its official........ DH passed!!:cool1::cool1::rotfl::rotfl::cool1::cool1:


He is now a Phd candidate so on to the qualifiers and dissertation!

I'm exhasted and completely brain dead. Dr visitis, shopping for cruise, worrying about money for trip that has not come in yet are all really taking a toll on my brain. Cant keep a clear thought in my head:( Not to mention I cant lose weight when stressed so not the 20lbs lighter I had hoped to be for the cruise:(. Anyone else notice that even if you diat when feeling really stressed you still dont lose weight? So much for it all being the calories we intake.

Any way you will either see me alot as I go stir crazy on partia bed rest or not at all as I sleep my way throught the 10 days or so of down time to prep for our trip. We are either leaving memorial day wekend for US and seaworld then cruise or mid week for Seaworld then cruise. I have two hotels booked until we know for sure how much cash we have. Money is there but might not come in in time to go:(. I'm trying to be positive because some things are comming in before I expected :cool1: and are more income to boot:cool1::cool1: but still need late invoice to go to US. Such is the life of a small business owner.

BTW

HAPPY MOTHERS DAY:lovestruc

My dear kids made me breakfast in bed and in no time flat my bouncing DD7 bounded on the bed and spilled my tea:rotfl:

Pain free vibes:goodvibes and pixie dust pixiedust:

[brighteyes]

Well guys its official........ DH passed!!:cool1::cool1::rotfl::rotfl::cool1::cool1:


He is now a Phd candidate so on to the qualifiers and dissertation!

I'm exhasted and completely brain dead. Dr visitis, shopping for cruise, worrying about money for trip that has not come in yet are all really taking a toll on my brain. Cant keep a clear thought in my head:( Not to mention I cant lose weight when stressed so not the 20lbs lighter I had hoped to be for the cruise:(. Anyone else notice that even if you diat when feeling really stressed you still dont lose weight? So much for it all being the calories we intake.

Any way you will either see me alot as I go stir crazy on partia bed rest or not at all as I sleep my way throught the 10 days or so of down time to prep for our trip. We are either leaving memorial day wekend for US and seaworld then cruise or mid week for Seaworld then cruise. I have two hotels booked until we know for sure how much cash we have. Money is there but might not come in in time to go:(. I'm trying to be positive because some things are comming in before I expected :cool1: and are more income to boot:cool1::cool1: but still need late invoice to go to US. Such is the life of a small business owner.

BTW

HAPPY MOTHERS DAY:lovestruc

My dear kids made me breakfast in bed and in no time flat my bouncing DD7 bounded on the bed and spilled my tea:rotfl:

Pain free vibes:goodvibes and pixie dust pixiedust:

Congrats Tigg to you and hubby, it's been a long haul for you both!!!!! Time to breathe. I hope everything works out for you money wise. SOmehow, it will all work out.:) I hope you get everything done in time, I know we don't always feel like we don't get everything done before we leave and it's overwhelming, but soon you will just be able to breathe!!!!!!!!!!!! pixiedust:

:cloud9:

[onnawufei]

Well guys its official........ DH passed!!:cool1::cool1::rotfl::rotfl::cool1::cool1:


He is now a Phd candidate so on to the qualifiers and dissertation!WOOOOOOO! Congratulations! party:

I'm having a bit of a "huh?" moment, since Sunday morning I woke up and my ankle was hurting like crazy. I hadn't twisted it, it felt fine when I went to bed Saturday night, but by the time I woke up it hurt to move it... forward and backward? Up and down? Eh, the way that isn't side to side. Today I wore an ankle brace to work and ended up leaving early because my body decided this was a fabulous time for a flare. I've been on the couch for the past five hours or so, but I was just getting way too bored. Anyway, hopefully I feel better tomorrow, and if my ankle doesn't stop hurting I'll end up making a doctor's appointment. (I hope I don't though. I need to shave and I'm not so sure if I could manage it. :eek:)

So yeah, my diet hits a snag again. I'm not spending too much time thinking on it though, no sense in getting grumbly over something I can't change at the moment.

Oh and we finally got another lizard. (The flying gecko we bought from a breeder didn't survive the trip. :() We ended up deciding on a crested gecko since that's what Ferb is and we named him (wait for it...) Phineas. Though we came very close to naming him Major Monogram. :rotfl:

[tiggspring]

:goodvibesWOOOOOOO! Congratulations! party:

I'm having a bit of a "huh?" moment, since Sunday morning I woke up and my ankle was hurting like crazy. I hadn't twisted it, it felt fine when I went to bed Saturday night, but by the time I woke up it hurt to move it... forward and backward? Up and down? Eh, the way that isn't side to side. Today I wore an ankle brace to work and ended up leaving early because my body decided this was a fabulous time for a flare. I've been on the couch for the past five hours or so, but I was just getting way too bored. Anyway, hopefully I feel better tomorrow, and if my ankle doesn't stop hurting I'll end up making a doctor's appointment. (I hope I don't though. I need to shave and I'm not so sure if I could manage it. :eek:)

So yeah, my diet hits a snag again. I'm not spending too much time thinking on it though, no sense in getting grumbly over something I can't change at the moment.

Oh and we finally got another lizard. (The flying gecko we bought from a breeder didn't survive the trip. :() We ended up deciding on a crested gecko since that's what Ferb is and we named him (wait for it...) Phineas. Though we came very close to naming him Major Monogram. :rotfl:

How are you feeling now? Dont you love these weird pains? I have one on the base on my neck on the C1 didnt do anything to it but hurts quite a bit when touched. DH says it looks a bit swollen.. Oh well one more thing to ignore.

Glad you got a new gecko what a cute name;)

Thanks guys for all the congrats. Dont think it has really hit us that its done. DH already picking up alot of the slack as he feared our trip was about to go CRASH if you know what I mean. I've been having a great deal of trouble staying stable. I've stopped making lunches in am as it is to much planning and the early am's are killing me. DH has picked up scouts and managing half the issues with the kids. I forgot just how nice it was to have a teamate when dealing with the kids aguments etc. I was really acting as a single parent even when he was here since he was always at his desk doing something. I had no idea how hard that was until I stopped. Anyway taking a break today got 80 pect of my packing done yesterday:cool1: Rest today then shop for odds and ends tomorrow, thow them in the bags and I will be done! Then my 10 days of downtime (although I do have one field trip to supervise) Still dont know how long we are going for since we are still waiting on checks I have til next wed to cancel so there is time and DH called client and it should be here in time. We will see. A seaworld/cruise vaca is nothing to sneeze at. More than I could have dreamed when I booked two years ago:goodvibes. I would just like to get US off our list of things to do as a family before my oldest turns 18. If we head back to FLA I want it to be for my 20th and a small renewal of vows. In the next 5 years I would like to fit in a cross country trip in a pop up like I did as a kid only see the grand canyon or yellowstone both of which my family did their second trip. I would also like to get to hawii or alaska. SO with two big trips I'm not sure we will make it back down to FL for US if we dont go this time. Our WDW trip for DD dance the magic might be our last trip to WDW too. Although if DH business take off the sky is the limit:thumbsup2

Well blabbered enough. Hope you are all doing well. You will either see me here more as I'm bored out of my mind resting in bed or with feet up or not at all ifI find myself sleeping til the trip comes. Either way I learned my lesson last time. I have to really rest up.

Sending pain free vibes:goodvibes and pixie dust to allpixiedust:

[tiggspring]

Pixie dust please!!! I have until tusday am to get my husbands busness check in or we cancel the frist part of our trip. We will have a fantistic time either way but would really like to pull off the vaca I planned or two years;). Here's hoping universal is in the cards for SUNDAY!!!!!:goodvibes

[brighteyes]

Pixie dust please!!! I have until tusday am to get my husbands busness check in or we cancel the frist part of our trip. We will have a fantistic time either way but would really like to pull off the vaca I planned or two years;). Here's hoping universal is in the cards for SUNDAY!!!!!:goodvibes

Ok so I know this is kinda last minute - BUT what happened????? Did you get the cheque you needed in time. Are you going to universal???????

I hope everything worked out for you, :wizard: :pixiedust:

[singjenn]

Hey everyone! This is a super long thread so I didn't read all of the posts:rotfl2:

I have been on this board for a while but never knew this thread existed!

I'm 34 and I also have fibromyalgia. It stinks. I hate it. :mad:

I was diagnosed when I was 15 and re-diagnosed when I was 23.

I have tried two of the three meds.

Lyrica is the more recent one I have tried and it didn't do much for me. I started taking another one right before Christmas (begins with S, forgot what it was called). It made me very sick so I topped taking it. I also didn't like having to take it twice a day.

I kind of got used to the pain so I really don't know remember what it's like to be pain free.

I guess that's pretty much my general story. Thanks for letting me share :)