Chronic Fatigue Syndrome,Fibromyalgia, and other "invisible" illnesses in WDW

[dyna]

We been waiting till school is out and our disney visit is behind us to ask Dr to put DD 15 on the lyrica. We haven't had good luck with most meds and many has been much more trouble than they worth due to the side effects. Hence the wait and DD not due to see her dr again till then anyway.

DD was DX'd with CFS and Fibro among other things when she was 13 and 14 yrs old. She missed at least 3/4ths of the 7&8th grades. Went back to school last year in April with her class taking her honors classes and made the honor roll after being out almost 2 yrs.

This year tho not pain free by any means she has done very well in her weighted honors classes and played volleyball, basketball and softball as a 9th grader. Seems the more active she stays the better she feels over all.

The Lyrica should be ideal for DD as she has a central pain processing disorder along with the fibro. I don't know how she stands to do sports as sometimes she can't stand to be touched at all even the slightest touch is very very painful other times she's pain free because her whole body is numb.

BTW a cousin who is mid 30's now has been on the Lyrica for a few months it has allowed her to go off most all her other meds she was on for the fibro and she says her thinkin is much better and the fog is much less. Thinks that her body was fighting the pain so much it effected her thinkin and increased the fog now that the pain is much less and she doesn't have near the drugs in her system she is functioning much better.

 

[starflower]

I'm so glad I came across this thread, even if it's a little old. My fiance and I are getting married at WDW next May and are going down this August for a planning session/vacation. I have Rheumatoid Arthritis and have been to WDW previously, but in the last year or so I've had both arches collapse and had cartillage damage in both my arches and knees. I handled WDW pretty well the first time, though I did have to soak or ice my feet and knees a lot. This time I'll be unable to walk for long distances or stand for more than a few minutes at a time, so I know I'm going to have to look into getting a wheelchair or something similar.

I wear arch and ankle supports, but those are usually hidden by my shoes or clothing and I'm fairly young (27) and look healthy so people often can't tell I have a medical problem. I'm a little nervous about people at WDW not taking me seriously because I don't have a "visible" illness. I'm glad to see that other people's experiences have been so positive.

 

[sneezy1956]

Starflower I have RA and Fibro...I have to use an ECV to get around disney but at home I'm up and walking just have to pace myself.

Most of the CM's at disney are awesome! Just take it easy and try to rest as much as you can. Also with the RA make sure you keep really well hydrated.

 

[SueM in MN]

bumping up

 

[barkley]

i am now disabled but prior to my strokes i worked for social services and one of my assignments was as a supervisor in the unit that handled county/state medical services for adults with pending social security disability applications. i would read hundreds of ssdisability applications, doctors reports, denials, appeals...each month, and after a while i saw some factors that seemed to contribute to a valid application getting accepted the first time around (vs. appeal after appeal).

*get all the doctors despite their specialty to include all diagnosis, symptoms, meds...in their reports (if ssa sees the same info. from ALL the treating physicians it seems to carry more weight). when i applied i provided each of my doctors (primary care, neurologist, psychologist...) with a letter that reminded them of the diagnosis each had given me and the treatment/prognosis. they used these to refer to when filling out the forms-and some were nice enough when they were done to send me a copy that i could provide to the others for future reference (when reevaluation time comes up).

*when filling out the self evaluation sheet be very detailed and let them clearly know what your absolute 'worst day/flare-up' is like. even if you've only had one time when you had to have assistance in toileting or other personal care document it so they will know the full scope of your disablility.
(i also gave a copy of this to my doctors so they could remark on the validity of my statements). advise any friend/family member who may have to fill out a supporting statement of what you've reported in yours-so they can comment on those areas they have personal knowledge of.

finaly-before you consider hiring a lawyer to handle your appeal (who will take a chunk of your retro benefits)-contact your local health and social services office and see if they have social security advocates. the agency i worked for did-and these people knew that program inside and out-they would assist from initial application, help get the medical provider forms, put together any documentation needed for appeal-and appear at appeals hearings-all at no cost. and always remember APPEAL, APPEAL, APPEAL-if you don't and you reapply you've lost your original begining date of aid (i saw cases get approved on appeal many years after the original application-and as a result the disabled person got tens of thousands in retroactive benefits).

good luck to those having to deal with this.

 

[Haley Whippet]

I think this hot weather (100+ degree days) for going on 3 weeks has sent my fibro and CFS into orbit. I have felt so bad for the past few weeks.
I walk Miss Haley as much as I can but can't do much else.
Hope the weather cools soon..
Deb

 

[MommytoMJM]

I know just how you feel, I've barely left my house for weeks.... It's 97 with a heat index of 100 here *still*

 

[sleepingbeautymama]

Hi, I haven't had a chance to read all the posts but I too suffer from invisible disabilities. I've had fibromyalgia and chronic fatigue syndrome for 12 years now, I was only 22 at the time. I remember on my 1st Disney trip I was less than a year into my illness and I wasn't even diagnosed at the time. We really only spent a few hours at a time at the parks. I just couldn't do anymore. I felt worse as the days went on. We went to MGM first so I was able to see most of that park but when it came time to go to Epcot and MK I only saw probably 1/3 of Epcot and I only saw Tomorrowland at MK. I did enjoy the trip though and we went swimming every evening which was nice. I've just learned that I have to take it easy and I can't do it all anymore. Just recently I was diagnosed again with another invisible disability, PN (basically a damaged nerve) and so it has made things even more difficult. I thought my fibro pain was awful and this pain is 10 times worse and now it hurts to sit, walk, stand so I know this trip will be even harder for us. I may rent an ECV but it's still hard for me to accept this illness especially since I look well. DH knows that we may or may not see much of the parks. I really want to go to just enjoy the beauty of it all and to see my dd4 meet the characters. I'll be happy if all we do is see MK for my dd. I know we most likely won't go to MGM, and Epcot we are only going for a Princess dinner and hopefully to see Illuminations. I hope I feel up to see AK since it wasn't there last time I went. Just curious if any of you have taken Lyrica? I was given this to try but haven't yet. I'm just nervous about what I've read about side effects. I'm always that person that is in the 1% category who has a problem. (Sorry if any of this was mentioned in previous posts, I hope to get time to read through them)
My dd also suffers with an invisible disability. She has sensory issues and we think Autism (but not officially diagnosed yet.) This is going to be her first time at Disney. I'm nervous about the obstacles we face and I hope we can have a good time. I feel sorry for dh since he has to sacrifice things all the time for me. Hope you all have a great trip!

 

[Haley Whippet]

sleepingbeautymama
Do get a ECV at WDW, it makes it so much easier...
With my ECV I can spend the day at the parks and not miss a thing.
My doctor wrote a Rx for a ECV and I now have my own.
It makes a big difference. I have had FMS and CFS for 15+ years.
Good Luck
Deb

 

[jtwras]

I am so pleased to see that this thread has helped. It can be so frustrating to have an invisible illness. Love to you all!

 

[tobylars]

I have one of the "invisible" issues and will probably rent a wheelchair, but I won't need it for walking, but for waiting in long lines & periodic resting. I can't stand in line very well, and in the humidity I have a major problem with standing. I will be alone with my 7 yr. old grandson--his first time to DW. I am so excited for him. Will it be OK to let him ride in it sometimes? I know he will get exhausted with all the walking, so why not? I know he can't push me so sometims I would just be putting our backpack in it to help save my energy. Will we get alot of grief about pushing an empty wheelchair?

 

[KPeveler]

unless you use a wheelchair in daily life, you will most likely not be able to push yourself in a rental wheelchair. they weight between 50 and 60lbs, and the arm rests are very high, so it is very hard to reach the wheels. they are also usually in very bad shape, and do not always roll easily. i think you may need to look into renting a scooter. the queues and rides are sometimes at the top of hills, like the Land, and CMs are not allowed to help you in any way move the chair.

i have a quickie 2 that is in pretty good shape and i purposefully "work out" before going to disney and i still cannot get myself around disney...

basically go to your local walmart and see if you can push one of their chairs around for an hour in the store... the disney ones arent even as nice as those sometimes!

 

[tobylars]

That's good to know, thanks.

 

[KPeveler]

i bought my quickie2 off ebay specifically for disney, cause the park chairs are very uncomfortable!

i should say, though, you are not allowed to have your grandson on the scooter with you, whether you rent one there or have your own or rent from outside the parks...

 

[Cheshire Figment]

Hi tobylars and to disABILITIES!

As KPeveler says, unless you are really used to pushing yourself in a wheelchair you will very quickly run out of steam. I know last year when I was recovering from hip replacement surgey I did not have too much trouble pushing myself around, but that was on level floors. When I was on a rug surface it was almost impossible.

You might want to give thought to renting an ECV, you might want to read some of the disABILITIES FAQ, epecially the first couple of pages. Note, however, that it is unsafe to have a child ride along on the ECV and rentals, both from Disney and outside sources require the driver to be at least 18.

If you click on where it says "disABILTIES" at the top of this page it will take you to the Index. One of the top items is the "disABILTIES FAQ" which will gives lots of useful information, including where people rent ECVs.

Or, if you want an easier route, click on the link in my signature.

 

[tobylars]

Thanks. I do realize that my gs wouldn't be able to be on the scooter. This board has helped me realize I should talk to my Dr. about meds to help with the mobility/stiffness. My problems have increased more the last few months and the Dr. isn't really aware of how much.

For the rest I need, I think I will just slow down my planned agenda--I used to be the Go, Go, Go tourist, but I guess that isn't always possible anymore. GS might not even be aware of AK, DHS or Epcot!! I haven't talked about the trip to him because we want it to be a surprise, so maybe we can just spend an extra day or 2 at MK and skip one of the other parks.

For dealing with waiting in lines, I am going to explore portable seats that would be lightweight--maybe one of the cane seats or something I could carry on my back. I just don't know if I want to spend the money on the scooter even though it would be great. I had to get one at DL a few years ago---didn't know it, but I was developing a blood clot--long car ride to airport and the flight did me in---I loved it, except that the DL one was so slow that my sons were always waiting for me to catch up.

THANKS for making me think of alternatives.