Fibromyalgia Thread

[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. 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. 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. 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 Nice to see you too, but wish it was on a different thread.

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.

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. Having said that, our vacations are definitely worth it and I wouldn't miss them for anything.

 

[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!

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!

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. 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!

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!

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. 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. 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. 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.

 

[tiggspring]

Leota,



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) Hope this helps. Look forward to seeing you around. Its been quiet around here hopefully we will all get back posting more soon


Sending pain free vibes and pixie dust to all

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.

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

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 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 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 worked8.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 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!!! What else are you up to besides cleaning up disaster zones


I had posted imediatly after you but its not here


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

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. Skylight to be replaced in a week or two if we dont get more snow

I was trying to exersize but pain sidetracted me for 6 days sad since I only got about 5 days in. Today got on the wii and lost another 3 lbs (20total) then the wii congratulated me on reaching a new goal...10hrs yea for me 10hrs in 10 months I'm a bit worried because I need to lose another 30 to be my pre crash WDW2010 weight. I was pleasantly plump then , now just fat. 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 and pixie dust to all

 

[SeaSpray]

Hi everyone

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

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.

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"....

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

 

[tiggspring]

Hi everyone

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

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.

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"....

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

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 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! 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....

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.

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. 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.....

 

[tiggspring]

Well, I made it thru the vacation! 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....

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.

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. 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.....

So Glad you had a good time

As far as recovery last trip it took me the better part of a year to catch up 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 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 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


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

Sending pain free vibes and Pixie dust to all

 

[SeaSpray]

Well, I made it thru the vacation! 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....

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.

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. 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.....

I'm glad that you had a great trip, but I'm sorry and can commiserate with you on the "recovery" afterwards. 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. 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

As far as recovery last trip it took me the better part of a year to catch up 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 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 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


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

Sending pain free vibes and Pixie dust to all

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. ) 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. 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. 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. ) 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

Sorry your having a hard time. The weather here has been all over th map and so have my symptoms. Im down 3lbs 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.

Congrats on the layoff!!!!???? 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

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. 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 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

hugs to all

 

[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. I cant imagine dinner for 22. 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.

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

Pain free vibesand pixe dust to all


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!

 

[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!