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SaintMolly
03-21-2001, 09:46 AM
Hi,
I was wondering if anyone out there has Fybromyelgia and if you have been to Disney since you have been diagnosed with it? I am 33 years old and have had it for 3 years. I have some good days and some bad days. Sometimes I have pain in my joints or my muscles. I have been waiting to take my 7 year old ds and my 5 year old dd so that they would be at the perfect age to see Disney for the first time. We will be in Disney 5/19. If you have this disease then you know how painful it can be and that other people looking at you think that you are a normal person. My question is do they have wheel chairs you can rent if I get there and I feel that I cannot walk or stand for very long? Would you feel funny using a wheel chair for transportation and then get off of it when you got to your destination like the rides? I do not want this disease to interfear with taking my children to a long and over do vacation to Disney. I would love to hear from anyone who has this disease.

Thank You.

Saint Molly :(

teri
03-21-2001, 10:25 AM
Welcome, Molly. Let's see if we can turn that frown into a smile. :)

There are several people here who have fibromyaglia and go to Disney often who can help answer your questions. You might want to read through the GAC Information (http://wdwinfo.infopop.net/OpenTopic/page?q=Y&a=tpc&s=40009993&f=38009194&m=1170918421) post, and also look at the posts about wheelchairs and ECVs. We will be working on a page about hidden disabilities soon. The real key is to take very good care of yourself, and pace yourself while you are there. This page is not nearly done yet, but here is a link:
Taking care and pacing yourself (http://www.wdwinfo.com/sites/teri4/pace.html)

Classic Post about using a wheelchair or ECV (http://wdwinfo.infopop.net/OpenTopic/page?q=Y&a=tpc&s=40009993&f=38009194&m=83809379#185097212)

:)

http://www.wdwinfo.com/sites/family/galc.gif
"My brain takes a vacation just to give my heart more room..."
teri@iluvdisney.com

SaintMolly
03-21-2001, 11:30 AM
Hi,
Thank you for the information I will look into it.
I know I sound down but I am realy trying to keep me head up. This has been a tough year for me. You can see my post on Sun Damage under family posts. I am looking forward to this trip more then any other vacation it is very much needed at this time.

Thank You,

Saint Molly

teri
03-21-2001, 11:49 AM
I know all about really needing a vacation!!!! I think we all do. :) You will have a good time.

Another good post to look at...
Practical Tips for Special Needs Travelers (http://wdwinfo.infopop.net/OpenTopic/page?q=Y&a=tpc&s=40009993&f=38009194&m=119098506) soon to be a web page FAQ near you!

http://www.wdwinfo.com/sites/family/galc.gif
"My brain takes a vacation just to give my heart more room..."
teri@iluvdisney.com

faeflora
03-21-2001, 01:10 PM
I am pretty new here to, and along with my genetic disability of Ehlers Danlos Syndrome I also have fibromyalgia..I found that preplanning helped alot at WDW, I normally decide how many things do I feel are a must to see, I take my time and avoid the sun (normally I avoid the summer all together but this year we are doing a second honeymoon and so we are going in July), I use a wheelchair (my own) but I advise going ahead and renting one, it will make you trip so much easier. I also take a soak in a warm tub at the end of my Disney Day, I do this as home to and it is wonderful.
There is so much information on this board and everyone is so very nice...enjoy


faeflora

mamajoan
03-21-2001, 02:28 PM
Molly, you have come to the right place.:) I ventured onto this board about a year ago, I have found MANY suggestions life changing.. NO KIDDING! As for a trip to Disney, go and have a great time. An ECV(electric scooter) is IMHO the easiest way to stay Independent at Disney. It allows you the freedom to go whereever and whenever you want to go. As for your fibromyalgia, Disney is huge, take your time, take breaks with your family back at the pool. Bring your meds, ask your doc if you can increase or add to your meds for the extra activity. It is a challenge to take Disney at a slow pace. Your body will thank you! Have fun! :cool:

SueM in MN
03-21-2001, 04:06 PM
It looks like you have been properly welcomed to the Board and got your questions answered. Feel free to ask any more that you like. They don't all have to be about WDW. We are not so particular on this board to keep on WDW subjects. If it has to do with WDW or disabilities or coping, it's fair game here.%

SueM in MN
Co-Moderator of disABILITIES (http://wdwinfo.infopop.net/OpenTopic/page?q=Y&a=frm&s=40009993&f=38009194)

SaintMolly
03-21-2001, 04:37 PM
Thank You all for the support! I feel better knowing that I do not have to suffer if I get there and find it hard to walk around. I just do not want to let my family down if I can not keep up. After finding out about the GAC Pass I am more relaxed about the whole thing. I was worried that I would be stuck standing in a line in the hot sun. Now I know there is a chance that I can get this pass and this should help out. Now I want to thank all of you and ask that you visit the boards on Disney for families and see sun damage: Take care of yourself and your children. I hope this some how will help you like you have all helped me. Please pass on the sun information to anyone you care about. You just might save a life.


Thank You!! :cool:

mikamouse
03-21-2001, 04:55 PM
well I am 39 and have been diganosed with Fybro for 7 years now....I have been to disney a few times with this(heehee). but I am always in pain...my joints are always swallon.....for me I NEED the heat and the sun..It makes me feel better(as much as to be excpected) I have rented the EVC on half of the trips..It all depends on how well I do with water therpy before going...I try to get to WT at least 2 months ahead of time....then I can usally walk the walk...only now I have a problem with my asthmsa..so now I am wondering if I should just go and rent a EVC.....I do hate the park ones thou...I rent them from walker.I also will use the hottubes in the resorts!!!! that feels soooo great! I just find it takes alittle more planning for me...and I always get a resort with quick access to like the Epcot resorts....

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SaintMolly
03-21-2001, 05:07 PM
Mikamouse:
I noticed you live in MA. I also live in MA. Had enough of the snow how about you? Does your pain move around from place to place? How about the muscle spasms? Twitching in your muscles? Burning on the bottom of your feet? I find it hard sometime to just hold the phone. Did you know that people in the same family can get this? My mother has had it for 18 years and I have had it for 3. They do not know what realy causes this but I find it strange that both my mother and I have it. My mother is much worse then I am. She is seeing a doctor in Boston who is treating her with anti-siezure medication and I am waiting to see how it works for her. How and what are you doing to deal with this?

:rolleyes:

ElaineM43
03-26-2001, 09:13 AM
Please don't forget to take your heating pads. They take up little space and for those of us with Fibro, it can be a welcome relief at the end of a long day.

Elaine
When you wish upon a star...

Judy from Boise
03-26-2001, 09:15 AM
Molly, I have fibro too, I still do all my own walking ( I have no joint pain just the classic muscle pain and tender points) what works for our family is to let me lead. Otherwise we walk too fast ,and I kill myself trying to keep up. The hot tub works well at the end of the day. Also, could you get a massage mid trip at one of the spas ?

One hint, do not go on R&R coaster....it put me right into a flare that lasted a week after we returned home ! That launch is way too traumatic for our poor bodies !

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SaintMolly
03-26-2001, 10:35 AM
Thank you for the tip Judy on the R&R Roller coaster I will keep that one in mind. ;)