Disney with fibromyalgia?

[mbh98akh]

Is it possible? I ache bad just after a day at work(I work every other day because of the pain) but several days in a row? Any suggestion??

 

[olwyngdh]

Rent a scooter. It is the only way it is possible for me. The exhaustion and pain is just too much to handle otherwise. I also carry my pan pills and muscle relaxers with me. I have a canvas bag I hang over the steering column of the scooter that has handles long enough that it rests on the floor of the scooter that I carry stuff in rather than trying to do a backpack or fanny pack. This way I can carry water without the weight bothering me, carry a poncho in case I need it, and after last January, if I go back in the winter months, a blanket to cover my legs if I get chilled again!

 

[mbh98akh]

How much do those cost?

 

[ErinTwinmom]

I just rented 2 for 8 day from Buana Vista (sorry spelling) for 500 but got 10% off for getting two and I think a daily rate based on number if days, still cheaper than the parks and we can hop with them and use in downtown Disney.

 

[mbh98akh]

Oh wow! I don't think I can afford that! Thanks!

 

[lanejudy]

How much do those cost?

In-park rentals cost $50 per day, and can only be used in the parks.

While I personally have not rented an ECV at WDW, I think I've seen people quote ~$200/week for an offsite rental, which can be used to/from transportation and around your resort as well as in the parks and elsewhere. There is a list of vendors in the disABILITIES FAQ sticky near the top of this forum. "Featured" vendors can utilize bell services/luggage services at the resorts for drop-off and return; other vendors will arrange to meet you directly.

Enjoy your vacation!

 

[ratlenhum]

I just rented 2 for 8 day from Buana Vista (sorry spelling) for 500 but got 10% off for getting two and I think a daily rate based on number if days, still cheaper than the parks and we can hop with them and use in downtown Disney.

Not to hijack the post, I just reserved with buena vista and it's our first time ever with a scooter. Does it come with directions for taking it apart? We rent a car and will be needing to put it in the trunk

 

[lanejudy]

Not to hijack the post, I just reserved with buena vista and it's our first time ever with a scooter. Does it come with directions for taking it apart? We rent a car and will be needing to put it in the trunk

There are different models available, so you will need to make sure the vendor is aware you plan to transport it. They will provide you with the appropriate model ECV. As for instructions, you may want to ask.

Enjoy your vacation!

 

[ratlenhum]

There are different models available, so you will need to make sure the vendor is aware you plan to transport it. They will provide you with the appropriate model ECV. As for instructions, you may want to ask. Enjoy your vacation!

Thanks

 

[kath2me]

I use a Go Go Elite at home, comes apart in 4 pcs,, anyway, get the same kind of scooter from Apple Scooter,, great price also, check them out

 

[DisneyMim]

I've had Fibro for 10 years now and go to Disney often. I don't need a scooter at this time, but would not hesitate to use one. I take frequent breaks. I have never been a thrill ride type of person so when the rest of my family is on a thrill ride I sit and rest. We are not and have never been morning people and this helps me as I need some time in the morning to "get myself going". We are DVC members and usually stay in a villa with a kitchen and this also helps in the morning as we really take our time with breakfast and any meds I have taken have a chance to kick it. We almost always do the dining plan so take long lunch and dinner breaks. I feel I need to eat well as this helps me too. I always have water with me (we rent a car and go to publix). Renting a car helps me too because I don't need to worry about waiting for a bus and then standing all the way back to the resort. As for parking I don't have a handicap parking sticker yet (a friend who has fibro just got one) but my husband just tells the CM in the parking lot that he wants to drop me off at the entrance and I wait for the rest of them. If I am feeling okay and the parking does not seem to far I walk.

Going to Disney with fibro, as in EVERYTHING in life it seems with fibro, can be a challenge but it can be done. Since I have had fibro I try very hard to focus on what I can do rather than what I can't do. Just take things slow and if you need a scooter get one. I hope you enjoy Disney as much as I do.

Enjoy The Magic!!

 

[mbh98akh]

I've had Fibro for 10 years now and go to Disney often. I don't need a scooter at this time, but would not hesitate to use one. I take frequent breaks. I have never been a thrill ride type of person so when the rest of my family is on a thrill ride I sit and rest. We are not and have never been morning people and this helps me as I need some time in the morning to "get myself going". We are DVC members and usually stay in a villa with a kitchen and this also helps in the morning as we really take our time with breakfast and any meds I have taken have a chance to kick it. We almost always do the dining plan so take long lunch and dinner breaks. I feel I need to eat well as this helps me too. I always have water with me (we rent a car and go to publix). Renting a car helps me too because I don't need to worry about waiting for a bus and then standing all the way back to the resort. As for parking I don't have a handicap parking sticker yet (a friend who has fibro just got one) but my husband just tells the CM in the parking lot that he wants to drop me off at the entrance and I wait for the rest of them. If I am feeling okay and the parking does not seem to far I walk. Going to Disney with fibro, as in EVERYTHING in life it seems with fibro, can be a challenge but it can be done. Since I have had fibro I try very hard to focus on what I can do rather than what I can't do. Just take things slow and if you need a scooter get one. I hope you enjoy Disney as much as I do. Enjoy The Magic!!

Thank you! I've decided to just try and see how I do first.

Sent from my iPhone using DISBoards

 

[WheeledTraveler]

Since you say you're going to try to do the parks without an ECV at first, I'd suggest really keeping track of how you're feeling and try to leave (or rent an ECV/wheelchair) *before* you start having real problems. Same with any pain medications; take normal ones on your normal schedule, but if you have breakthrough medication take it at the first sign that your pain might be higher than normal. It's far harder to recover after fatigue or pain is too high than it is if you preempt the serious problems. You'll also likely actually end up using less pain medication and need less rest if you're trying to stop before the problems start. If you think you just need a quick rest (rather than going back to where you're staying), it's possible to lie down at the First Aid centers in the parks. You can also call an offsite vendor after your trip starts if you decide you do need an ECV, but it might take them a day to deliver one to you. As well, my experience was that renting for a longer period often did result in a lower cost when averaged out over days than shorter rentals (usually it's at around a week that you'll definitely get a price break, but it depends on the vendor).

Honestly, with your description in your original post, I'd expect to be renting a wheelchair or ECV within an hour or two of first reaching the park. If you're trying to go all day, you'll be walking an absolutely minimum of 4 miles and probably more than 6. The majority of that walking will be between attractions so not something where most ride queues make much of a difference. There are no places to sit in queues (and no way for you to wait elsewhere and meet your party when they get close to the boarding area). Even when I first started having problems (I don't have a fibro diagnosis, but many symptoms of my diagnosis do overlap with fibro), I couldn't have done those distances multiple days in a row due to aches and fatigue even though a year prior I was competitively running cross-country for my high school.

With the amount of money a trip to WDW costs, you're better off finding the money together for renting an ECV or wheelchair from an offsite vendor than to overdo it early on and spend the rest of your trip in the hotel. ECVs from an offsite vendor are far less expensive than renting in a park. Wheelchair rental is far less expensive than an ECV (offsite probably about $50 for a week), but you'll need someone to push you in it and WDW is not flat so it can be a lot of work. You could also push it when you feel like walking and sit when you need to sit (you still want someone with you who can push if needed). Either way, using the mobility aid could substantially improve what you can do in the parks so that you'll get more out of your park ticket.

With either a wheelchair or ECV you would have the option to only use it between areas and walk through queues, as well. That said, WDW mostly has mainstreamed queues so it isn't really much extra hassle to use the mobility aid in the queue compared to walking through the queue. There are also a couple very long queues in terms of distance (1/4 mile one way with no way to shorten that) so having that seat could be more useful in queues than you realize. Using the mobility aid will help conserve energy. Also, if you're at all touch sensitive, a mobility aid will provide a little more buffer from other people bumping up against you.

 

[DisneyMim]

Thank you for you post. Wheeled traveler gave you great advice. You may need a scooter and it will be easier to rent one before you need it.

I also wanted to add that we have APS so I don't feel the need to do parks every day all day. Disney IS very expensive and you want to be as comfortable as possible. There are days I only go into the parks for a few hours and days I don't go in at all, just go by the pool and relax.

You really have to find out what will work best you YOU. Only you know how tired you will be. Firbo is an exhausting illness and a lot of times it's a day by day struggle. Some days are better than others. As I said before, I hope you have a wonderful time.

Enjoy The Magic!!

 

[mbh98akh]

That's the other thing, I opted out of medicine besides aleve or ibprophen. The meds available to me didn't work well for me. Made me feel worse than the actual disease. But thank you for all your input. I figured I would be able to do every other day. And since we are going in January I won't have to worry about the heat that makes me worse.

Sent from my iPhone using DISBoards

 

[DisneyMim]

I wanted to tell you you are not alone. I don't take anything besides Excedrin, Excedrin with aspirin Tylenol, etc. I went to one of the leading doctors of Fibro (in Boston) and he put me on some "wierd" stuff that just made more sick!! I told him no thanks and went back to my own remedies. Sorry, didn't mean to turn this into a medical thread, but it's always nice to hear of other people going through the same thing.

I think your idea of doing every other day will be great. There is so much to do at Disney besides the parks that sometimes I feel people miss things in their haste to go on rides. If you can get past the "ride frenzy" and I did LONG ago, we can have just as much fun staying by the pool, visiting other resorts, eating at different places. I do realize that for some people it's a once in a lifetime trip and they feel they need to do it all, but really, most people go back. Disney is additive!!

Anyway, as I have said, I really hope you have a wonderful time!!!

Enjoy The Magic!!

 

[rosanab1031]

Hi OP! I have fibro as well and I went to WDW for the first time last year for 4 days. I had the same fears. The way I did it was using my cane, taking my medications on a regular basis, drinking lots of water, and taking lots of breaks The jacuzzi helped a lot too with the muscle aches I hope you have a wonderful time!

Oh and by medications I mean ibuprofen with an occasional vicodin. Haha. I did some yoga stretches as well in the morning and at night. I don't take any other types of medication. Just yoga, acupuncture, and chiropractic

 

[stalkingmickey]

I wanted to tell you you are not alone. I don't take anything besides Excedrin, Excedrin with aspirin Tylenol, etc. I went to one of the leading doctors of Fibro (in Boston) and he put me on some "wierd" stuff that just made more sick!! I told him no thanks and went back to my own remedies. Sorry, didn't mean to turn this into a medical thread, but it's always nice to hear of other people going through the same thing.

I think your idea of doing every other day will be great. There is so much to do at Disney besides the parks that sometimes I feel people miss things in their haste to go on rides. If you can get past the "ride frenzy" and I did LONG ago, we can have just as much fun staying by the pool, visiting other resorts, eating at different places. I do realize that for some people it's a once in a lifetime trip and they feel they need to do it all, but really, most people go back. Disney is additive!!

Anyway, as I have said, I really hope you have a wonderful time!!!

Enjoy The Magic!!

Sorry I saw you said you were diag by a dr in Boston curios who the dr was? I have seen several in Boston and still 10 yrs later I am still searching for some type of daily functionality.

To the OP it took me 6 years to get up the courage to try Disney again. I was so nervous how I would feel after a few hours in parks, after a ride that really jerks u ( like most of them lol), the next morning!! this past Sept 2013 I took the plunge...I paced us and took breaks when needed some things got canceled towards end of trip because I just could not keep going. We went again in Jan because I did so well. We are going back in Sept and I think this time I am gonna have to get an scooter. my body is not doing well at the moment but I am gonna go and make best of what I can do.

Good Luck

 

[DisneyMim]

stalkingmickey, I can't find the name of the doctor I went to. It was a number of years ago. I know he was in Newton-Wellesley Hospital. He did not diag. me, that was my primary doctor who sent me to him. He was very nice, but I don't think enough is known about fibro yet. Hopefully someday they will find out more and it will help us.

As for daily functioning.... well, I think we all have to find what works. For me I HAVE to walk every day or I get worse. Walking, even though every step is painful, helps me. I don't know if it "loosens" my muscles or what, but it does help. My heating pad is my friend. I don't even put it away, it's in my family room and is part of my "decor" HA HA!! For me the sun helps very much. I live in the Boston area and we don't get good weather all year, but I find that I am better in the summer. We go to Disney a lot in the summer and I find that it helps me. As I said before, I take a LOT of breaks. Rides don't mean that much to me anymore, and the "jerky" ones...I don't do many, although I love Dinosaur. It somehow doesn't bother me (it is much calmer than the original ride). I am more of a wedway type of person anyway!!

I think as far as Disney goes, we all have to find out what works for us. IMHO Disney is one of the best places to visit for anyone with health issues because there is so much to do. You can do as much or as little as you like. There are times we plan to go on a ride and as I am walking up to it I'm just not "feeling" it and don't go on. A big one is Ellen's. I really like the ride, but another "issue" I have (WOW!! Not more secrets here!!! LOL!!!) is the bathroom!! I know every bathroom is Disney!!! I should write a book!! Ellen's is a long ride so I have to judge if I can do it or not. I realize some people are bothered by this, but I have LONG past gotten over it. As I said before I focus on what I CAN do, not what I CAN'T do.

This is much longer than I thought and hope I didn't bore people. Fibro is a very hard thing and it is always a learning thing. There are days I go to the mall, get out of the car, hit one store and BAM I'm done. Other days I'm good to go. Same at Disney. Pace yourself, relax, LAUGH(it really is the best medicine) and go with the flow.

Enjoy The Magic!!

 

[WheeledTraveler]

The doctor at Newton-Wellesley was probably Dr. Don Goldenberg.

I saw him over 10 years ago after I'd been diagnosed with fibromyalgia, but wasn't responding to any of the treatments (meanwhile my functioning was getting worse and worse). I wasn't all that impressed. He didn't have any ideas that we hadn't already tried (and even wanted me to try gabapentin again even though I'd hallucinated while taking it at a much lower dose than is supposed to be effective for fibro). I also definitely felt like he was one of those "I'm the hotshot specialist therefore everything I say is correct" types. He also wasn't interested in checking for any of the conditions that can create similar symptoms, but aren't able to be diagnosed by bloodtest. Eventually I was undiagnosed with fibro (not by him) and then a few years later finally diagnosed with Ehlers-Danlos Syndrome. I still don't have fabulous treatment, but I will take stable after 10+ years of mostly decline.