Fibromyalgia

[DumboFan82]

I was diagnosed with fibromyalgia about 6 months ago. I've had it for a few years; just took a long time to get a diagnosis.

I would like advice as far as foot pain goes. I have a lot of trouble with foot pain with my fibromyalgia. When I went to WDW last summer, the foot pain got unbearable. I prefer not to use an ECV as moving around a lot really helps my symptoms tremendously.

To be fair, last year I only brought one pair of shoes to wear. My doctor recommended I buy four more pairs of supportive shoes, and rotate daily what I'm wearing to ease foot pain. I'm doing that and just in my daily life that's really helping. I'm just wondering what other tips anyone might share as far as how to either help prevent foot pain, or more importantly, is there a way to treat my feet at night to soothe the pain?

I have 5 really great pairs of supportive sandals I'll be bringing (Chacos, Tevas, Eccos, Keens, and Merrells) and rotating. I'm bringing blister pads just in case. But I'd love to hear other suggestions.

 

[lanejudy]

Welcome to disABILITIES!

I'm sure someone will have suggestions for you specific to WDW. But I also want to share with you that we have a whole Fibromyalgia thread on the disABILITES Community Forum where you will find lots of others familiar with the challenges on a daily basis.

Enjoy your vacation!

 

[DisneyMim]

I have had fibro for over ten years now and go to Disney often. My pain is not so much in my foot, but really all over. How I cope is that I go with the attitude that I will not do everything I want to. Granted I go so often that it doesn't matter if I do a ride or not. ANYWAY, my tips are, first if you need a scooter get one. I have not needed one yet, but if the day comes I will get one. I want to enjoy myself with my family and if I need one so be it. I take it very slowly. I do not have a handicap hangtag (not yet anyway), but we rent a car and my husband tells the people at the parking lots that he needs to drop me off. He then sometimes finds a really close space. I should add that we are NOT or anywhere close (LOL) rope drop people. This helps in that I cut down on my walking. We always take really long lunch and dinner breaks. I sit when I need to. If everyone else wants to go on a ride I find a nice place to sit and wait for them. Sorry I can't help with the foot pain. I do take more meds than I normally would at home. We are DVC members and I usually use the jets in the bathtub at the end of the day. Really you need to listen to your body and rest when you need to. I know that for most people Disney is all about hurry hurry run to the next ride, etc., but we have stopped doing this. Disney for us can be relaxing. I know I know hard to believe, but it can be done. I'm sure a lot of people will give you great advice, but this is my 2 cents!!

Enjoy The Magic!!

 

[nikkislaght]

Hey there... I have had Fibro for about 7 years... been to Disneyland the last 6 years.. I use my Merrells and Tevas.. and love love love them.. Take lots of rests.. drink plenty of water.. take your meds..!!! a must. eat properly.. I also have arthritis in my hip and lower back.. so I get a GAC.. so I don't have to do the stairs... if this is something you feel you need , then make sure you go to City Hall and ask for one.. they don't give for mobility purposes per say.. but if you cant do stairs they take that into consideration when you ask. otherwise rent a chair or scooter.. going slow and steady is the way to go.. have a great time..

 

[Bete]

I went with a cousin with fibro and the scooter is the best answer. She looked at the cost as added value; because, she could last in the park so much longer. Offsite scooter rentals are much cheaper than getting one in a park.

When she wanted to walk she parked the scooter for a while. It really made her happy that she could go a longer day with using a scooter. Park tickets cost money, too and if you can have a longer day in the parks using a scooter then you get better value.

 

[Susie63]

I have been diagnosed over 10 years now. I cannot wear normal shoes(sigh) due to the pain in the bottom of my feet. The only shoe I can wear are Crocs custom cloud Rx. They are getting hard to buy now,but they are the most comfortable shoe to walk in. I can do 12 hours in the park with no foot problems..... my body on the other hand is a different matter lol

 

[Gracie09]

Hey there... I have had Fibro for about 7 years... been to Disneyland the last 6 years.. I use my Merrells and Tevas.. and love love love them.. Take lots of rests.. drink plenty of water.. take your meds..!!! a must. eat properly.. I also have arthritis in my hip and lower back.. so I get a GAC.. so I don't have to do the stairs... if this is something you feel you need , then make sure you go to City Hall and ask for one.. they don't give for mobility purposes per say.. but if you cant do stairs they take that into consideration when you ask. otherwise rent a chair or scooter.. going slow and steady is the way to go.. have a great time..

The gac program has been discontinued and they don't give out the das to avoid stairs. You tell the attendant at the ride you need to avoid stairs and they will tell you what to do. Also remember you can go to first aid and lie down if you need to rest in ac for a while.

 

[ammag]

I've had me/fibro for 16 years I am getting a scooter for my next trip it is an amazing help. Sounds like you have good shoes, I have the added issue of wide flat feet so most of those don't fit. I end up in sneakers a lot which I hate when it is hot but the pain is worse. Have you seen a podiatrist or ortho in td diction to your regular doctors? They might have some good solutions. I do foot exercises too, rolling the foot on a frozen bottle of water helps. Or heat, depending. Just sit every opportunity you have don't forget to pace yourself

 

[ttintagel]

I don't have Fibromyalgia, but I do have trouble with my feet due to autoimmune arthritis, osteoarthritis, and lots of old stress fractures from osteoporosis (early menopause after ovarian cancer). So, I have some experience with the agony of de-feet, even if it’s not quite the same.

I have gone without an ECV (although I probably won’t do it again), and second your doctor’s advice about rotating shoes. I also echo the PP who talked about adjusting your expectations bout how much ground to cover in a day.


Other than that, I did find a few more things that helped.

• Build plenty of breaks into your day. I know there aren’t a lot of benches left in the parks, so if you’re not able to get up and down from sitting on the ground (thankfully I’m still able to do that), it may be harder to find spontaneous resting places.
• Making an ADR for a sit-down lunch worked out well, as did returning to the resort for an afternoon siesta.
• Waiting in line was a great time to do stretches. I don’t have specific stretches for the feet, but flexing my ankles, legs, and back helped a lot with overall pain levels.
• Stick to a regimen of pain medication instead of waiting until it hurts to take something. Set an alarm on your phone or watch for the next dose. Sounds like you’ve already talked to your doctor about the trip – did they have any recommendations about temporarily increasing your pain medication? Might be worth calling and asking if it didn’t come up.
• Elevation whenever possible. I slept with pillows under my feet (called Mousekeeping for extras), and tried to find places to sit where I could at least keep my feet level with my hips (such as on the ground). Lots of massage whenever I sat helped, too.

Finally, if you’re sure you don’t want the ECV, maybe consider a rollator. It can take some of the weight off your legs, and provide you with an instant seat if you can’t find one when you need it. You can also push an empty manual wheelchair to get the same effect. Whatever you decide, keep the contact information for an ECV/Wheelchair rental company with you - if you discover that what you're doing isn't working for you, they can get equipment to you pretty quickly.

 

[Lambiebell]

I was diagnosed 17 years ago. And if you feel that moving around helps, then try not to get an ECV if you can help it.
My suggestion would instead be to *plan* on down time in the middle of each day. Either a sit down meal or a long ride/show that you can just take some time to relax and not worry about rushing or moving too much for a little while.
Planning in general is a huge help. Don't go back and forth around the park. Pick a section to start in and do the things you want to do in that area before you leave it, so you don't wear yourself out just covering ground you've already been on.
And make sure you drink plenty of water. Every single one of places that sells cups of soda will give you a cup of water or ice water for free if you just ask. So you don't have to spend hundreds of dollars on water bottles. But getting enough *water* into your body can make a big difference into how it handles the parks!

 

[StitchesGr8Fan]

Our trip in Nov was my first since my Fibro diagnosis. My tips:
If you take medication, stay on top of it and don't take doses late or skip them because you are busy
Get enough sleep
Stay hydrated
Fidget when standing still - this is key for me for keeping the lower half of my body from excruciating pain

Have a great trip!

 

[my3princes]

We leave for WDW in a few hours. I have rented an ECV for the trip since I know that my energy levels and walking abilities are limited. I felt that I would be judges since this is an invisible illness so I came up with a couple of signs for my ECV and I thought I'd share. It will only allow me to upload as a thumbnail as the file is too big and the other one won't even load as a thumbnail.

 

[mamabunny]

Our (adult) daughter has fibro, and is an adult bi-lateral club-foot "survivor" (her doctor's word, not mine!) She has endured so many procedures on her feet, and the fibro adds an additional issue.

Through sheer force of will, she walks and stands daily as part of her job, and finds that she has been able to adapt/accommodate most everywhere but... WDW. LOL it's just so big, and so much ground to cover!

Some of the things she does:

- switch out shoes during the trip, but also during the day. She brings along 3 to 4 pair, and we always have a different extra pair with us that she will put on about halfway through the day. (include socks + extra socks for cooler months and evenings)
- we bring Epsom salts from home, and she will soak her feet in the Resort room; sometimes during a midday break, and other times just at night. (depending on the day)
- she carries half a tennis ball in her purse, and she will sit, pop off her shoes and put the tennis ball on the ground/floor (cut side down) and massage her foot/feet on that. (there are also foam rollers and other devices sold similarly for this; her personal preference is for the tennis ball)
- as suggested above, she props up her feet at night, and anytime she can find a bench (or two chairs together during the day) she will try to elevate her feet.
- something new she has been trying: we have a WonderGel cushion that I bought for my office chair (the thicker 2" one) and she will put that on the floor and kind of work her feet into that; the gel is cool, and also gives some resistance without adding pressure points. We hesitate to take it along on the trip (it's so *heavy*) but may see if we can just cut one down to a size that is smaller and more manageable.

We do lots of things to help her stay as mobile as possible on vacation, not the least of which is that we have learned to schedule everything with lots of breaks. Even when we fly, we build in a longer-than-normal layover into our schedule so that she doesn't arrive exhausted from trying to race through the airports. At WDW, we do Park Hoppers so that we can do a couple of hours in the park, then maybe go back to the Resort, then maybe to Disney Springs for a while, then ride the bus to another park where we will sit for a snack and then go on for another hour or two. To the casual observer, we would *appear* to be laid-back and relaxed; in reality, we are just conserving resources and pacing ourselves.

We have also found that the time of year makes a HUGE difference; walking on (already hot) pavement seems to bring on issues faster; we now try to only schedule between mid-late September through late April-early May as a result. That alone has made a significant difference for her comfort levels.

We NEVER try to do "commando" style touring - it's just too stressful for her and I both. I know that it's easy to get that feeling of "I have to do everything on this trip because:

[A] I came from so far away
-or-
I paid so much money
-or-
[C] I may never get to come back again
-or-
[D] All of the above​

Take your time at WDW; there is so much to enjoy regardless of where you are or what pace you move at!

Good luck on your next trip!