Fibromyalgia

[pigletforever]

I was recently diagnosed with Fibromyalgia and we are headed to the World in January. They are working on getting my meds strait but I have no idea how long that will take.

Is there anything I need to know/do before we go or while we are there that will help me make it thru 10 days? I know about GAC. We get one for DS who as ASD. My DH suggested an EVC. Do I need a GAC for me as well or will one for the family work?

Any advice on how to handle the World would be appreicated.

 

[Cheshire Figment]

If you will be using a wheelchiair or ECV you will not need a GAC unless you have something other than a mobility/stamina problem. For example, a person who is in a wheelchair but also has audio problems will need a GAC so they can sit close, especially when at a show that is being interpreted.

And if you do need one (over and above the ECV), you should have one to cover your needs while there should be a GAC to cover the needs of your daughter.

 

[DisneyRN1]

Hi,
We spent 6 days at WDW in Dec. I also have fibromyalgia. I got my Dr. to ok a handicap parking sticker for the time we would be there. I don't need one most of the time at home b/c my husband lets me out wherever I need to go and then parks. Anyhow, I used to be like a kid-get there before the parks open, run to the first rides, etc. I found that it is now around lunch time before I feel up to getting to the parks. We took plenty of breaks, didn't set any schedule, etc. It may be more difficult for you since you are there with a group and they may kinda push you some without realizing how hard it is to keep up. We didn't see everything or ride every ride like we used too, but at least I got to go. If you think the ECV would make your time easier, do it. Two things I was disappointed about: the handicap paking sticker wasn't that usefull-EVERYONE also has them, so sometimes we parked farther away in the HC lot than we would have parked in the main lot and taken the tram. The other thing that bothered me was the fact that with the dining plans, the sit down resturants were full of families with tired, screaming kids. No flames from anyone please-I'm just expressing my opinion. I don't know if that is one of the things that bothers you or not, but when I am really tired and hurting all over, noises, esp. high pitched things really bother me. You used to be able to go to the sit down places and enjoy the coolness, peace and quiet. I don't know if anything here will help you, but it is possible to enjoy yourself at WDW with fibromyalgia, you just have to do it slower and probably different. Vicki

 

[motherhen17404]

I was dx with Fibro this past October and we had our trip to WDW planned for Nov. I just knew I was not going to be able to walk the parks for the 10 days that we had planned. I thought about sending my DH and DS on the trip and I was going to stay home. I did not want to ruin their trip. But then it dawned on me, it was my trip too. So we rented a scooter. That was the best thing I have ever done for myself! I used the scooter to "save me steps". In that I mean that I rode it to each ride, parked it in the stroller parking and walked onto the rides. It was a lifesaver. My Dr. did sign the form for me to get a temp. handicap tag to take with us. But I agree with the other poster, sometimes the handicap parking was farther out then the regular parking.

Good luck with your meds. I was on the new med, Lycria, but it did not work for me. I hope they can find something that works for you. Have a great trip.

 

[sneezy1956]

I've had Fibro and Rheumatoid Arthritis for way to long. The big thing to remember is that many of your meds make you very sun sensitive so be careful about being in the sun, also heat and stress can really make the fibro and the RA flare so take frequent breaks and try not to stress.

Many people with Fibro have problems with noise try to find some place to destress, I try to spend some time at my room or in a quiet area of the parks. Noise is a big stress factor for me the sound florecent lights put out drives me up a wall and makes me hurt so badly.

If the fibro causes pain be sure to rent an ECV it makes the difference between being able to enjoy the parks and not being able to.

Most of all if you start feeling stressed or tired rest!!!! If you don't you may end up flat on your back for 2 or 3 days.

 

[shovan]

pigletforever,
For your trip, if you two are able to share the ECV that might be enough for you. It would depend on how much walking you feel you are able to do, how much pain you're in & how easily you get tired.
I have avoided bringing one, (my DH has MD, we have an old scooter I could use) just because packing one more piece of med. equip. is overwhelming to me. I always say I'll rent one if neccesary then don't do it because of the cost. Then by the 3rd or 4th day I'm really hurting.


I know this is sort OT, (if you don't mind discussing this) but what meds has your dr. put you on? I was recently diagnosed & the dr. is insisting on me getting off Lunesta (the only thing that helps me sleep) & using muscle relaxers instead. Which either don't help me sleep or make me totally loopy. I've been trying his method for a week & I'm pretty miserable.

 

[motherhen17404]

Shovan-

I hope you don't mind me chiming in. I am sorry you are not sleeping. I went through that too. My Dr. put me on Elavil. It is a old med. that is a anti-depressant, but they found out it works better for sleep issues. It took me a while to get used to it, but it does help me sleep. And most mornings I don't have that sleepy, loopy feeling. It might be worth a try asking your Dr. about this. Good Luck!

 

[shovan]

Shovan-

I hope you don't mind me chiming in. I am sorry you are not sleeping. I went through that too. My Dr. put me on Elavil. It is a old med. that is a anti-depressant, but they found out it works better for sleep issues. It took me a while to get used to it, but it does help me sleep. And most mornings I don't have that sleepy, loopy feeling. It might be worth a try asking your Dr. about this. Good Luck!

Not at all! I really could use a Mother Hen right now!
I really annoyed with the dr. right now. I saw this dr. 2 yrs ago when my RA factor came back high. He didn't think I had RA, but only mentioned Fibro. He gave me muscle relaxers then & they didn't work well.. So I pretty much ignored all the problems ( my gp had given me lunesta & that was at least helping me sleep) until I had this car accident in Dec. It has been bad since then & after getting check out from ortho drs again, finally it dawned on me that maybe it's Fibro. So I went back to the rheum. & with no further signs of RA he diagnosed it as Fibro. But he insisted I try the flexeril again. I told him I didn't think it would work & asked about anti-depressants, sleep meds & Lyrica. He insisted I get off of the Lunesta and follow his regimen. I have to go back to him next week. I will ask him about the Elavil. Thanks! I'm hoping I don't have to go on a hunt for another doc, there don't seem to many around that even acknowledge it as a disease.

 

[sneezy1956]

A good rheumatologist will accept it as a disease and act on it. The problem is it seems to so often be tied to some type of other disease and they seem to all be tied together. It seems like everyone I know that has Fibro either has RA or Lupus or another autoimmune disease.

 

[shovan]

A good rheumatologist will accept it as a disease and act on it. The problem is it seems to so often be tied to some type of other disease and they seem to all be tied together. It seems like everyone I know that has Fibro either has RA or Lupus or another autoimmune disease.

So far, (knock on wood) the rheum. dr I saw was pretty positive that I don't have RA. He did say it would be something we'd have to keep an eye on. He didn't mention anything about lupus. Or any further test right now.

 

[Tonya2426]

A good rheumatologist will accept it as a disease and act on it. The problem is it seems to so often be tied to some type of other disease and they seem to all be tied together. It seems like everyone I know that has Fibro either has RA or Lupus or another autoimmune disease.

Add me to the list of people with an autoimmune disease (Ulcerative Colitis) that causes Fibro. It's no party to be exhausted all the time and not have anyone understand. T

he only sleep med (and I've tried all of them) that work for me is Ambien. I've stopped mentioning that I take sleeping pills to people b/c I always get the "those are addicting" comments. I'd like for them to not sleep for days on end. Thankfully, my doctors know that if a person doesn't sleep their body can't heal.

My saving graces at WDW are fast passes and the sit down shows - American Adventure, Beauty and the Beast, Philharmagic, etc... They give me 20-30 minutes of good sit down time to rejuvenate before I hit the next line.

 

[RNMOM]

Another one with Fibro here. I was first diagnosed with psoriatic arthritis and this past fall started having the constant pain and aching and was dx with fibro. I am on flexaril which helped for the first month but no longer is helping. I am not able to take a lot of meds due to allergies and liver enzyme elevations so it is a bit of an issue with me.

I have used a scooter my past two trips to WDW and it was wonderful. I also have osteoarthritis in my knees, ankles and back so that was the cause but now I have my own scooter and use it to shop/mall and such.

I can no longer work but didn't get okay'd for disability. I don't get why we don't get tax breaks for disability even if we don't get payments for it? You'd think we'd be the ones that need the $ help most.

I have such problems with "fibro fog" and just feel lost a lot of the time. Sleep is still a problem for me and on top of it I have had this awful chest cold virus the past two weeks. I haven't been out for two weeks and tomorrow I don't care if I am ready to die I plan to be outside. We will finally get a day in the high 50's here. I need sunshine and warmth.

 

[Earstou]

I have fibro along with Chiari (a brain malformation). I tried flexeril but didn't like the drugged sleepy feeling it gave me. So my doc switched me to skelaxin. I used that until I needed my neck fusion and my neurosurgeon told me muscle relaxants were causing my neck problems to be worse.

That's the story of my life, can't use a med for problem A because it makes problem B worse! I did a sleep study which showed I wake up about 8 times every hour. But I can't take anything for sleep, because that might depress my breathing, which is bad enough already!

Until Tuesday, I hadn't had a fibro flare since my neck fusion 1 1/2 years ago. I had forgotten how awful fibro really is. How hard it is to have the constant, all over pain! Sure am glad to have had the break from it! Sure wish more people understood.

 

[dyna]

My DD was dx'd with fibro, CFS, restless leg syndrome, a central pain processing disorder among other things at the age of 13 she is now 17 cymbalta keeps her fibro pain in check without the cymbalta she can not function.

After missing more than 3/4ths of 7th an 8th grades she has been back in school ever since on honor roll playin volleyball, basketball and softball the more active she is the better she feels....

 

[TinkerBellToo2]

Hello All....... I was dx with RA in 2003, OstoA in 2005, and Fibro in 2007. Seems like every 3 years something is going to effect me. I am on Remacaid, Actonel, Lyrica, Methotrexate and so on. I have good days and bad days but always have some sort of pain. DH and I will be going to WDW in 29 days, and was wondering if I should rent a ECV. I have had to stop working and I am not old enough to collect SS and they say that I am not eligable for Disability. That's the government for you. But it is okay to send money to other countries to help with their problems. Go Figure. Oh boy am I side tracking. Anyway do you think it will be alright to rent an ECV for our tour of MK?

 

[pigletforever]

They have so far tried Neurotin and it worked but i had a HORRID side effect so they took me off it and switched me to celebrex and it hasn't done a darn thing. Everytime I call my doc (not a specalist) she offers hydrocodone. NO THANKS!!!!! I also take Prozac. I was taking Luensta to sleep and she took me off of it and put me on Xanax because I also have anxiety and sleep issues. I do sleep with the drugs but if I don't take them it is awake all night tossing and turning but I wake up feeling really drugged when I take them. They have also decided I have RA. My doc is trying to get me into a specalist because she admits she has very little experience with thesse diseases and knows I need help. I know I need a sleep study but she wants to wait to get me into a specialist so I sit and wait and hurt.

I do have the Fibro fog. I can't knit anymore and typing after 20 mintues kills me. I have been in school the past few sememsters but I had to drop to 6 hours half way thru this sememster because of all of this. I do wish my DH could understand this better. He ca't understand how I get so tired and sometimes the slightest touch sends me thru the roof.

anyone have any suggestions on helping him understand what the heck I am going thru? he travels every other week so it is just me and a 5 year old during those weeks and by the time he gets back to town I am so tired it takes me a full week to get back to normal again - just in time for him to leave again. It is so frustrating.

And I am so sick of when I tell someone what is going on all they can say is at least it is not fatal and they have treatments for it and you will be fine. GRRRRRR!!!!!

I am new to all of this and I am such a doer that not doing and going drives me nuts. I have always volunteered, worked/gone to school/ knitted, crocheted, quilted, beaded, run car pools, managed to keep a clean house and now I can't seem to get out of bed somedays. Doing a load of laundry takes all my energy.Sorry to complain but I really don't know what to do from here. is there any advice?

 

[tobylars]

I was diagnosed about 15 years ago, but have had minimal problems until the last year or so. I work full time from home and have the opportunity to sit in a recliner as needed, which gets me through the week. But sometimes when I try to go shopping, walk around the mall on the week-ends, etc, my ankles and hips are affected the most. We were in CA in Feb. visiting family and we were going all the time. If I could take my time and also take Ibuprofen, I managed, but I hurt so bad. The was the worst it has ever been. Dr. doesn't want me to take too much Ibuprofen because of the potential side effects, so at my next appointment. The interference with things I like to do, is the most frustrating!!!! I do take Ambien for sleep, but the Dr. & I are trying to find something else that would work since I have been using it for a while.

I will be in DW in August, I know, the heat/humidity will probably be bad, but it is when I can go. I will be alone with a 7 yr. old grandson. I am wondering if I rent a wheelchair so I can sit when I need to, will it seem weird if I am pushing it alot of the time, carrying our backpack, etc.? The humidity really gets to me and I can usually walk, if I don't hurt, but standing in the lines, even for 5 minutes can be horrible, so a wheelchair would allow me to sit while we wait. OR, would it be better to buy an inexpensive walker with a seat? Just thought about that!

Bonnie in MN

 

[toocherie]

Hello All....... I was dx with RA in 2003, OstoA in 2005, and Fibro in 2007. Seems like every 3 years something is going to effect me. I am on Remacaid, Actonel, Lyrica, Methotrexate and so on. I have good days and bad days but always have some sort of pain. DH and I will be going to WDW in 29 days, and was wondering if I should rent a ECV. I have had to stop working and I am not old enough to collect SS and they say that I am not eligable for Disability. That's the government for you. But it is okay to send money to other countries to help with their problems. Go Figure. Oh boy am I side tracking. Anyway do you think it will be alright to rent an ECV for our tour of MK?

Absolutely rent an ECV! If you otherwise would be in pain and not able to enjoy MK that is why the scooters are there~! [Cheshire has a great list of questions . . . . hopefully he'll jump in . . . . ]

I have Fibro too and am having a MAJOR flare right now (for the past five days) . . . .and going to Disneyland on Friday--and renting an ECV which I may or may not use all the time, but at least it will be there when I need it. Luckily, I've found there are plenty of places (usually stroller parking) to park the ECV, do a "land" while walking and then go get the ECV to go to the next. The biggest issue for me is going back and forth to the hotel.

 

[Cheshire Figment]

Basically a person has a certain amount of energy available to them daily. If they relax during the day the amount of energy available wil increase; when they sleep at night they recharge their system,

However, when in pain energy is used up much faster than in normal conditions. If you become exhausted, with by what you have done or, more importantly, what you have done while in pain your system will not recharge to the original energy level overnight and you are starting the next day with a lower amount of energy available.

Please ask the following questions. Here are the suggested answers to go with them.

1. Are you disabled (even temporarily)? Yes.

2. Do the people you are traveling with, such as your family, know you are disabled? Yes.

3. Do you expect to meet anyone you know during this trip who may not know you are disabled. Probably No!

4. Do you expect to meet a bunch of people who you will probably never meet again in your life? Probably yes!

5. Is there any reason at all that you should care what these people think about you? Absolutely No!!

6. Will using a wheelchair or ECV make for a better vacation for you and your family? Absolutely YES!

 

[shovan]

They have so far tried Neurotin and it worked but i had a HORRID side effect so they took me off it and switched me to celebrex and it hasn't done a darn thing. Everytime I call my doc (not a specalist) she offers hydrocodone. NO THANKS!!!!! I also take Prozac. I was taking Luensta to sleep and she took me off of it and put me on Xanax because I also have anxiety and sleep issues. I do sleep with the drugs but if I don't take them it is awake all night tossing and turning but I wake up feeling really drugged when I take them. They have also decided I have RA. My doc is trying to get me into a specalist because she admits she has very little experience with thesse diseases and knows I need help. I know I need a sleep study but she wants to wait to get me into a specialist so I sit and wait and hurt.

I do have the Fibro fog. I can't knit anymore and typing after 20 mintues kills me. I have been in school the past few sememsters but I had to drop to 6 hours half way thru this sememster because of all of this. I do wish my DH could understand this better. He ca't understand how I get so tired and sometimes the slightest touch sends me thru the roof.

anyone have any suggestions on helping him understand what the heck I am going thru? he travels every other week so it is just me and a 5 year old during those weeks and by the time he gets back to town I am so tired it takes me a full week to get back to normal again - just in time for him to leave again. It is so frustrating.

And I am so sick of when I tell someone what is going on all they can say is at least it is not fatal and they have treatments for it and you will be fine. GRRRRRR!!!!!

I am new to all of this and I am such a doer that not doing and going drives me nuts. I have always volunteered, worked/gone to school/ knitted, crocheted, quilted, beaded, run car pools, managed to keep a clean house and now I can't seem to get out of bed somedays. Doing a load of laundry takes all my energy.Sorry to complain but I really don't know what to do from here. is there any advice?

I wish I had some advice for you, but being a newbie to fibro myself, I don't have much to offer. But I sure do understand your frustration! My DH has muscular dystrophy & I'm supposed to be the healthy one. My husband has an iron will & has continued to work, and I work from home. But managing to get him out of bed, dressed & off to work, plus the total care of our house, is really getting beyond my abilities. Our 25 yr old dd lives nearby & I can ask her & SIL for occasional help, but they can't come over daily to help with his care.

I have to go back to the rheum dr. this week & I am dreading the visit. He's just so insistent on the muscle relaxers & getting off the Lunesta, & that I don't need to see a neurologist again. I tried it his way the last 2 1/2 weeks & am feeling worse than ever.

I was diagnosed about 15 years ago, but have had minimal problems until the last year or so. I work full time from home and have the opportunity to sit in a recliner as needed, which gets me through the week. But sometimes when I try to go shopping, walk around the mall on the week-ends, etc, my ankles and hips are affected the most. We were in CA in Feb. visiting family and we were going all the time. If I could take my time and also take Ibuprofen, I managed, but I hurt so bad. The was the worst it has ever been. Dr. doesn't want me to take too much Ibuprofen because of the potential side effects, so at my next appointment. The interference with things I like to do, is the most frustrating!!!! I do take Ambien for sleep, but the Dr. & I are trying to find something else that would work since I have been using it for a while.

I will be in DW in August, I know, the heat/humidity will probably be bad, but it is when I can go. I will be alone with a 7 yr. old grandson. I am wondering if I rent a wheelchair so I can sit when I need to, will it seem weird if I am pushing it alot of the time, carrying our backpack, etc.? The humidity really gets to me and I can usually walk, if I don't hurt, but standing in the lines, even for 5 minutes can be horrible, so a wheelchair would allow me to sit while we wait. OR, would it be better to buy an inexpensive walker with a seat? Just thought about that!

Bonnie in MN

A trip alone with a 7 yr old is quite an undertaking! The heat/humidity in Aug is going to be pretty awful. If I were you I would consider renting an ECV. Keeping up with a 7 yr old on your own, is going to be hard enough!