Fibromyalgia Thread

[SeaSpray]

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

Does anyone else spend the majority of their weekends sleeping and/or lounging with a heating pad?? I do... 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. 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. I just feel like life is "out there", while I'm "in here",whether I'm at home or at work.

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

We have lots to chat about! You sound alot like me. Usually I write novels 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! 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

Sending pain free vibes and pixie dust 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 even my 4 yr old got that! Check ridmax first. It will save you a ton of time planning 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. 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. 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) then she decided she would wander like crazy at epcot. 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. Bouts of insomnia too.

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

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 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 Really the prices will give you a heart attack on top of the Fibro/Cfids

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. 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 . 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 I was waking on my own around 8-9 and sleeping earlier 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.

I have done two things to make things a bit easier. I bought a pressure cooker 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. 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 Who knew that a vuccum could get your kids to clean their rooms?

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

Sending pain free vibes and pixie dust to all

 

[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. 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 . 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 I was waking on my own around 8-9 and sleeping earlier 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.

I have done two things to make things a bit easier. I bought a pressure cooker 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. 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 Who knew that a vuccum could get your kids to clean their rooms?

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

Sending pain free vibes and pixie dust to all

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!

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

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.

 

[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!

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. 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

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

Hi everyone

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.

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

 

[tiggspring]

Hi everyone

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.

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 . 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

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 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.

 

[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 and pixie dust to all

 

[tiggspring]

Roll callHow are you guys?


This weather is killing me 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 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-...T&icid=maing-grid7|main5|dl7|sec1_lnk3|101189


http://www.everydayhealth.com/fibro...A&icid=maing-grid7|main5|dl7|sec3_lnk2|101189

Sending pain free vibes and pixie dust to all

 

[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.

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 callHow are you guys?


This weather is killing me 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 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-...T&icid=maing-grid7|main5|dl7|sec1_lnk3|101189


http://www.everydayhealth.com/fibro...A&icid=maing-grid7|main5|dl7|sec3_lnk2|101189

Sending pain free vibes and pixie dust to all

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

I'm sorry that you're feeling so bad right now. 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. 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. Thanks so much for posting, we know we're not alone in this.

 

[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.

I'm sorry that you're feeling so bad right now. 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. 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. Thanks so much for posting, we know we're not alone in this.

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 You will love pressure cooking if you like crocks.

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 way

 

[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. 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 ), 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. 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.

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