Anyone been with Fibromyalgia?

[skydawn]

Hi. I'm going with my DH, DD9, DD7, and their Grandmommie. I'm a little worried about keeping my happy face in the happy place.

Has anybody been to Disney with Fibromyalgia? (well, I know they have but I mean anybody that is reading this) How was it? Any advice besides sit and rest when I can?

Thanks!!!!

 

[ProudMommyof2]

You would probably get much better responses on the DISabilities board. Good luck!

 

[Bete]

I went last year with a cousin and she says she has it. Supposedly, she's had the condition for at least 10 years; she is not on disability for it. Keep in mind, she works a 35 to 45 hour week back home. Her household includes a hubby, a grown-up grandson and his friend, and her mom (84); so, it's no piece of cake back home, either. Her two daughters visit quite regularly with grandkids, too. She smokes heavily and she can't quit; although, she has tried many different avenues, here. I wanted to give some background before I continued, here. At home, it seems she does pretty good.

Anyway, before the trip I convinced her to go with a scooter rental. I felt anything that would increase her time at the parks was well worth it. She had been there once before with us, 5 years ago and she didn't use a scooter at that time. With the scooter she lasted about 6 to 8 hours a day. She would not go for a rest and come back to the parks. One day she completely skipped going to the parks. I was very dissappointed with this outcome considering she didn't walk and half of our time was seeing shows or eating at the parks. We did not do anything commando style. She did very little walking.

I have a hard time determining if it was the fibro condition or her smoking habit or a combination of the two that made her so poor on this trip. We stopped at every designated smoking area we passed in the parks. She would get up about 3 am every night; because, she had to have a smoke. I have strong suspicions that she is horribly addicted to smoking to a large degree, now. I began to feel her smoking habit was the true cause of her lack of energy, but I could be wrong. I will never go to Disney with a smoker, again; I'm ready to be blasted, now. It just takes away too much time with vacation activities. I feel she was addicted to caffiene, too. I'm a caretaker for my mom with Alz; I needed to enjoy this break away from home and I did not like this trip. I went the year before with a friend and I had one of my best trips ever there. This was quite a contrast for me.

I think the best advice I could give would be to be well rested before the trip which includes packing way ahead of the trip; so, you are not pushing it the night before you leave. Second, I would rent a scooter. You can try w/o it, but I would strongly suggest going that route. I would definately take afternoon naps (everyone else could enjoy the pool, etc.); so, you could have a longer day. Those are my suggestions from my own personal experiences, here. Good luck.

 

[Wild4Walt]

I started to develop it last year and was OK. I am going back this year and am a bit concerned as it has progressed more quickly than I would have liked.

I don't know how advanced yours is, but for me it helps to bring a golf ball with and rotate it on the bottom of my foot nightly. This seems to give me a little relief and gear me up for the next day.

Once at the parks if it starts to tighten up too much, then I sit. Most parks I don't need to sit too often ( except for Epcot and sometimes AK )

Luckily, Epcot has lots and lots of spots to just sit and people watch so I have made that part of my plan.


There are always the scooters or a WC if you need. Forget vanity and do it if you need to vs. trashing your trip.

 

[Cheshire Figment]

I would definitely suggest going to the disABILITIES Forum. You might want to start by reading some of the disABILITIES FAQs, which you can get to directly by following the link in my signature.

 

[Mikailova]

A good friend of mine suffers from Fibro and while we have never done Disney together we have done six flags.

I also highly recommend the disABILITIES board and maybe a very helpful moderator might port this over there for you.

I made sure to give my friend a massage in the evening to help her relax the soreness and small back rubs and things when sitting at shows and stuff in the parks. She also brought a ball to roll over sore muscles and one of those small battery powered massage things that looks like a bug (they sell them at Walgreen's here) for the day. It fit in her back pack and was a great addition to our park bag, not only for her but myself as the baby will still in "carry me everywhere" mode at the time.

 

[skydawn]

Thanks! I had no idea about the DISabilities board. I will certainly get over there and look around.
Thanks also for sharing your experiences.
BLESSED WISHES!!

 

[iuki]

Hi. I'm going with my DH, DD9, DD7, and their Grandmommie. I'm a little worried about keeping my happy face in the happy place.

Has anybody been to Disney with Fibromyalgia? (well, I know they have but I mean anybody that is reading this) How was it? Any advice besides sit and rest when I can?

Thanks!!!!

I would recommend you try walking, and if the pain becomes unbearable, then rent a wheelchair or motor scooter. I have fibromyalgia, arthritis, and Morton's Neuroma. Last year I forced myself to walk and sat down when I needed to. My fibromyalgia has gotten worse, but I still plan to walk and sit when I need to. If in constant pain, I take Naproxen (along with Omeprazole). I try very hard to avoid using motor scooters or wheelchairs. I am fighting becoming dependent on them. However, if I experience too much pain, I will rent one.

Wishing you a wonderful vacation!

iuki

 

[tlrotzoll]

I, too, have fibromyalgia. I am very fortunate right now, as I still work part time, live a fairly normal life (whatever normal is ) & have a family that is very understanding.

Honestly, I think it is going to depend on the severity of your fibro.

Last time we went, I did just fine, however, I couldn't (& still can't) go from rope drop to closing. We are going again in Nov & I am working on getting in better shape so that I can, hopefully, go longer (& more importantly, I just need to take better care of myself). I definately have some "down days" planned every few days & know that I may have to come back to rest in the afternoon.

I have to admit though, my body tends to get me through stressful & tiring situations & then shuts down after. So I have to make sure not to push myself during my vacation so that I don't fall out when I get home.

Hope a couple of these tips help. Have a wonderful vacation & go at the pace that only you know what your body will allow!

 

[TinkerCarol]

I have had Fibro for almost 20 years now. I did Disney 3 times in the past year. Most days from 10 - close. I take lots of vicodin with, do a LOT of stretching daily, wear GOOD shoes and have a great time. For some reason, while in Disney World I seem to have less trouble with the fibro. Must be the magic and pixie dust! Everyone has their own road with fibro. Even my road is different from day to day. I do tend to have a lot of trouble with my feet, so I make sure I take all the treatments I need for a less painful time. Blister relief, nightly foot massage, great socks and pace myself. By the end of the trip I need days to recouperate, but it is all worth it to me. Good luck, and check out the disabilties forum.

 

[skydawn]

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I have to admit though, my body tends to get me through stressful & tiring situations & then shuts down after. So I have to make sure not to push myself during my vacation so that I don't fall out when I get home.

![/QUOTE]

*************************************
That was interesting to read. I've noticed that I can survive through stressful situations then I crash once it's over. I assume it's got to do with adrenaline? Anyways...

Your post is kind of how I'm picturing it to be. I'm glad to know people survived with enough gusto to go again!

 

[brighteyes]

I am not officiolly diagnosed yet but the drs are saying fibro or cmp or connective tissue disease. Anyway, I did Disney fine last year, wore very cushy shoes, but then I was only having most of my pain in my upper body. This last year however, I have gotten ALOT worse, and fast. My aches and pains now encompass my whole body. But thanks to a daily dose of amitryptilyne, alot of the daily all over aches are gone. I now can only walk about 1/2 block before I get excrutiating pain in my calf muscles. I feel like the muscle is not long enough when my leg stretches to walk. It is VERY painful and am angry that I cannot walk without trouble. I do have inflammation in the lining of my bones in my shins. I am still being investigated on this as I do not know why. It is just painful. So I feel your pain.

People are telling me to just rent an EVC but I feel like that is giving up my independence. And giving into whatever is wrong with me. I did do a theme park close to home this summer. I found if I limped through the excruciating part, it eventually got better.

I am told by dr. to NOT stop moving or that will make it more difficult to keep mobile. So if you can work through the pain, maybe it will get better?? However, do not overdo yourself. If I need to stop, I take a break and rest, even if it means every 5 minutes. But if I really NEED to I would rent and EVC.

Hope this helps, but I know everyone is different. Just do whatever is best for you so that you can have a magical trip.

Stephanie

 

[brighteyes]

I also take naproxen but doesnt seem to help. Heat packs and the tennis ball roll on the foot is what my physio therapist suggests. And good orthodics.

Stephanie

 

[WendyCFG]

Hi!

I'm going next week with my Mom who has Fibro. The last time we were there together was 5 years ago. Her pain has progressed quite a bit since then, and we're trying to plan for it. She will NOT use a scooter or wheelchair no matter how bad she hurts.

We are splitting our days a few hours in the morning then lunch
Back to the room to rest
Out for dinner and a few hours at the parks
I'm taking first aid ice packs (the kind you don't have to keep cold) in case she needs them
She's taking her heating pad for the room (I know that seems contradictory, but she says both help at times)
She bought 5 or 6 pairs of new VERY cushy shoes so she can switch up shoes quite often
She also puts her feet in ice water during afternoon breaks... I could NOT do that, but she says it helps her
We'll stop and "people watch" whenever things get bad, and stay open to skipping the parks whenever that would be better.
She also takes ambien to sleep at night so she rests better and and think that helps her during the day.
Other than that, advil for the pain
Drinking lots of water will help your muscles stay hydrated too...

Enjoy your trip... try not to worry too much over it. Just pay attention to your body and have fun

 

[Cheshire Figment]

I'm going next week with my Mom who has Fibro. The last time we were there together was 5 years ago. Her pain has progressed quite a bit since then, and we're trying to plan for it. She will NOT use a scooter or wheelchair no matter how bad she hurts.

Please ask her 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!

 

[brighteyes]

Please ask her 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!

Well it looks like I am not alone in my stubborness. But in all seriousness, I agree with Chesire, I just cannot bring myself to do it, YET. I suppose the day will come though.

Stephanie

 

[catsrule]

Sure have, many many times. I've had fibromyalgia since I was 23 and I am now 47. It doesn't stop me from doing anything.

 

[brighteyes]

Sure have, many many times. I've had fibromyalgia since I was 23 and I am now 47. It doesn't stop me from doing anything.

That's great! But, how do y ou do it? Do you take it slow and only go for a few hours? or do you rent an ECV? Share your secrets

Stephanie

 

[kvogel11202]

I am in the middle of a diagnosis, and while they seem fairly certain it's fibromyalgia they are doing every test imaginable, it's killing me. I haven't rented an EVC or WC yet, I too want as much independance as possible for as long as possible. I try to take well placed "breaks" - my kids don't know I'm in pain - they think I just LOVE to eat big long lunches! Oh, just for the record - it's been two years trying to get a diagnosis, so this will be my sixth trip coming up.

 

[iuki]

I would recommend you try walking, and if the pain becomes unbearable, then rent a wheelchair or motor scooter. I have fibromyalgia, arthritis, and Morton's Neuroma. Last year I forced myself to walk and sat down when I needed to. My fibromyalgia has gotten worse, but I still plan to walk and sit when I need to. If in constant pain, I take Naproxen (along with Omeprazole). I try very hard to avoid using motor scooters or wheelchairs. I am fighting becoming dependent on them. However, if I experience too much pain, I will rent one.

Wishing you a wonderful vacation!

iuki

Hi Skydawn -

Thought I'd let you kinow how my vacation went last month since my last post (as shown above).

After 5 days, for the first time, I finally rented an ECV. We stayed for 2 weeks, and I would not have been able to continue walking the theme parks. I kept fighting it, but my husband convinced me to rent one.

I rented one at two different parks and finally asked someone who rented one advertising 1-888-scooter. He explained they rent all over the U.S. and will deliver it to your hotel and pick it up. Just call them and tell them when you're checking in and checking out. He said he uses them all the time. It was cheaper and I didn't have to take those long walks to the bus stations since I could use it outside the parks.

I enjoyed the theme parks so much more because I was no longer in pain. My family members were happy that I rented one, because they didn't have to slow down and take breaks to accommodate me. I'll fight going into a wheelchair at home - but not at WDW.

Hope you're doing well.

iuki