Fibromyalgia

[hematite153]

Using an ECV or wheelchair will help him to manage his 'energy account' so he doesn't 'spend' the energy too quickly.

It will also allow him to save his energy for the fun stuff instead of wasting it on the trip to/from the parks.

 

[SueM in MN]

It will also allow him to save his energy for the fun stuff instead of wasting it on the trip to/from the parks.

 

[ILoveMyGirls]

I'm new to this board but not new to Disney. I've had fibro since 1995 and it has gotten worse and worse over the years. I have a lot of trouble moving around, am in pain and swell a lot, have chronic fatigue, etc. As I have had it for so long I am on the downside spiral of fibro. unfortunately. We are planning a trip to Disney though as I so want to go but realize we will have to rent an ECV or I won't be able to get around the park and will ruin everyone elses day.

I'll tell you having a severe case of fibro. really keeps one from going out and about.

 

[Eeyore5]

I have mild Cerebral Palsy, Fibro, and arthritis. I have found sleeping on a thick lambs wool pad makes a huge difference is my sleep quality and in my overall pain level. I have a travel pad that I bring on trips. It isn't as think as the one at home but does help a lot. It got mine from:

http://www.surroundewe.com/

I tried a different brand before that was cheaper and it didn't work as well.

 

[hematite153]

realize we will have to rent an ECV or I won't be able to get around the park and will ruin everyone elses day.

Make sure you test out using an ECV at home before counting on it. The need to hold down the lever to move set my fibro off pretty rapidly. Thus, for me and my fibro, walking with a cane was preferable to an ECV even when I busted my knee.

 

[Sandy1975]

thanks everyone. I tried to talk to him again, but I think he thinks of it as a defeat to have to use an ECV. He also thinks people will look at him weird when he can get off it relatively easily to get on/off rides, yet uses it through the park. I'll try to "checking account" idea, maybe that will help. thanks.

 

[peemagg]

Tell him he won't be the only one around with a ECV, looks healthy, and can get on and off of it to get on rides pretty easily. I am 41 and have had to use a ECV for the last 2 years due to a disease of the nerves in my feet. I too look healthy and can get on and off my ECV with little difficulty. I have never had any issues with anyone about why I am on it or any nasty looks or anything. It doesn't matter what anyone else thinks. I know that by an hour or less of walking I would be done. There is no way that I could go all day.

He needs to try it and see if it doesn't make a big difference in his enjoyment. What about a nice long day at a mall or somewhere that you could rent one after a while at home before going to give him a test? Can he even walk say around Walmart for 2-3 hours before he is in too much pain? Maybe if he does something like this and then realizes that a day at Disney is much more of that, he might swallow his pride and just rent a ECV.

One thing maybe you could do is rent one from an outside company and have it waiting for you? Then just tell him it is there if he needs it. I bet after one or two days, he will look at that differently and try it. If he doesn't just call the company and tell them it wasn't needed like you thought and ask them to pick it up. You might be out of a couple of days rental fee, but you at least had it in case he changed his mind.

 

[onnawufei]

I didn't end up needing a wheelchair last year but I'd considered it and when I expressed concern over how it would look bad if I got up to take pictures someone pointed out that I'm never going to see these people again, so what does it matter? They might not believe I have a disability, but that's their problem.

This might sound weird, but has anyone of y'all ever been on ToT? My pain is normally the worst in my back (upper, lower and middle. What can I say, I go all out) and neck so I'm just thinking it would leave me feeling pretty crappy. Ever since I first heard about it I've wanted to see the inside though!

 

[peemagg]

You can go in any ride without riding it. It is called the chicken exit. Just get in line and check out the inside, then when they get to the point that they are loading you into the cars, tell the CM that you changed your mind and don't want to ride. They will send you out a door and off of the ride.

 

[hematite153]

I've been on ToT and don't like the dropping part. But, I'm terrified of heights and I get motion sick pretty easily, so, it's really hard to say whether there's a fibro component to that dislike. I don't recall feeling specifically worse after riding it and I've had some pretty bad whiplash so my neck tends to be sensitive -- EE was horrific!

Despite my dislike of the drops, I still ride it periodically because the theming of the ride itself is so great. If I were you, I might plan to ride it near the end of the day and then head home to the resort hot tub to soak away any residual problems. But, it could be a risk and you always need to weigh the set of possible risks to decide which are most important for every trip.

 

[onnawufei]

EE is another one that I was thinking of going through the line but not actually riding. Hey, if nothing else the people behind me get to ride faster than they thought they would! Though in all honesty that's part "that would hurt" but mostly "I am afraid of roller coasters".

Now I'm just debating whether to pretend I chickened out or to actually tell them I just wanted to see the line. Only at Disney would someone actually want to stand in line.

 

[hematite153]

Now I'm just debating whether to pretend I chickened out or to actually tell them I just wanted to see the line. Only at Disney would someone actually want to stand in line.

I've gone through the line with my DW on several occasions and I think they usually assume I've chickened out, but, I doubt I'm the only one who never planned to even consider it.

 

[MEK]

Just found this thread and I am curious about fibromyalgia because when I hit menopause my body started to protest with fatigue and pain, particularly in the feet and legs. I am frequently stiff and my balance and coordination stinks.

I don't have fibro, but I started to feel like I had aged 10 years overnight. I noticed that a few of you said the sunshine helps. I started taking Vitamin a couple of months ago and I have notice a huge improvement in my aches, pains, and overall fatigue. Of course, Vitamin D comes from direct sunlight exposure. I am just curious if anyone has tried Vitamin D and if it has helped your fibromyalgia symptoms at all.

 

[brighteyes]

When I am at Disney I notice my aches and pains are not as bad. Now last time I was there was Christmas 2008, so I am not sure if I just wasn't in as much pain generally as I am now, or if the warm weather made the difference - OR BOTH!

I do notice however, that I hate the winter here because I do seem to have more flares on a more consistant basis.

I started taking VIT D supplements on top of my daily multi vitamin and I was taking too much cause I had horrible leg pains. Some articles suggest taking levels that are wayy too high. I spoke to my pharmacists and she said an extra 400 IUD (or whatever they are called) is good. I was taking twice that and had to quit. lol

Stephanie

 

[gottaluvpooh]

bump

 

[gottaluvpooh]

bump

 

[Happy Mom2]

I am glad to see so many people with fibromyalgia are enjoying Disney. My mom has had it for 10 years, but doesn't want to come to Disney because she doesn't think she can keep up with us. She also has rheumatoid arthritis.

I wore Cros for several years and kept suggesting to my mom that she try some. She finally gave in and loves them, but she can only wear one style.

Hope you all have great time in Disney!!

 

[eelore]

I also have fibromyalgia and have noticed that I dont have as many or as severe flareups at Disney. My theory is that because Fibro is triggered so much by stress and Disney is so stress free most of the time for me that it helps me feel better! I do however listen to my body and plan rest breaks and rest days if needed. I hate that everyone posting has fibro but it does help me to realize that Im not the only one who deals with it! I use a scooter because I also have an ankle disability but even if I didn't Id use one just to be able to do more. Conserving energy seems to be the key for me to be able to get around well at Disney. And if I get too hot I have pain and the scooter keeps me from overheating as much from walking. Another thing that helps on hot days is this scarf thing that most sporting goods stores have that is filled with these beads that cool when they get wet. I carry one along with a ziplock bag or two so that if it gets hot I can wet it and drape it around my neck. it works wonders to cool you off on a hot day! Then I can just put in in the baggie when I, done and store it in my scooter basket or backpack. And then hang it to dry out back in my room. Ive also taken breaks at the first aid centers in the parks. They are cool and have cots and icepacks. It helps to take a break like that even if its just for 15 to 20 minutes at a time. Learning to pace yourself and not trying to do everything in one day (or even one week) and listening to your body for needed rest breaks goes a long way in dealing with fibro at Disney

Ive found that i can have a wonderful time at Disney even with my limitations!!