Fibromyalgia Thread

Marlyn

DIS Veteran
Joined
Nov 18, 2003
Hi Marlyn: I have severe form of fibro myself, and struggle with the question to use an ECV or not! We go to WDW once a year. I usually start a "training" program 3 months before, consisting of going to the gym for treadmill use 3 x a week. I also take walks when the weather permits.
But I just can't get myself to commit to a scooter. I know I will be more comfortable, but I usually just walk with frequent rests. I also take prescribed pain pills. I always use an ECV in Epcot because there is no way I can walk around WS without one, but that's all.
So glad you had a great time with the scooter. It sounds like you had a good trip, even with the heat:)
Besides the fibro. I also have severe degenerative disc disease with a herniated lumbar disc. I actually think it’s this that makes walking and standing difficult for me. My overall body aches and pains are definitely the fibro, but my right leg giving out is the disc impinging on the right nerve root. Maybe without that I wouldn’t need a scooter, but I don’t know. I think the fibro came after the herniated disc
A training plan doesn’t work for me as increased walking etc causes my leg to give out
 

disneyseniors

DIS Veteran
Joined
Jun 2, 2014
Besides the fibro. I also have severe degenerative disc disease with a herniated lumbar disc. I actually think it’s this that makes walking and standing difficult for me. My overall body aches and pains are definitely the fibro, but my right leg giving out is the disc impinging on the right nerve root. Maybe without that I wouldn’t need a scooter, but I don’t know. I think the fibro came after the herniated disc
A training plan doesn’t work for me as increased walking etc causes my leg to give out
Wow, talk about a double whammy. Life is sometimes not fair. My husband had a broken disc and lots of associated problems. He had major back surgery 2 years ago. He waited too long to get the surgery (stubborn:), and now has nerve damage in one leg. So I know what you are talking about. He finally agreed to use an ECV because of this nerve damage and subsequent limp. The pain is all gone!!! that's fantastic, but the nerve damage is there. So, I can sympathize with you. He has a job where he walks a lot outside which is hard on his leg. He feels his leg muscles getting weaker, and is going to start at PT program to help strength these muscles. Maybe that would help for you. I hope so.
And then, fibro thrown into your mix? Unfair!
 

Marlyn

DIS Veteran
Joined
Nov 18, 2003
Wow, talk about a double whammy. Life is sometimes not fair. My husband had a broken disc and lots of associated problems. He had major back surgery 2 years ago. He waited too long to get the surgery (stubborn:), and now has nerve damage in one leg. So I know what you are talking about. He finally agreed to use an ECV because of this nerve damage and subsequent limp. The pain is all gone!!! that's fantastic, but the nerve damage is there. So, I can sympathize with you. He has a job where he walks a lot outside which is hard on his leg. He feels his leg muscles getting weaker, and is going to start at PT program to help strength these muscles. Maybe that would help for you. I hope so.
And then, fibro thrown into your mix? Unfair!
Yes, double whammy. It is what it is. I just adjust my life to deal with it. I’m glad your husband’s pain is gone. I have been going to physio regularly for 2 1/2 years...it helps me from getting worse, but really hasn’t improved on where I am. The place where I feel the best is in the water. If I could move to typhoon lagoon and live in the lazy river then I would be very very happy!
 

mamabunny

DIS Veteran
Joined
Oct 11, 2012
You are right, of course. It's not just me. My husband won't use one full time and I feel guilty using one. I know, a lame excuse. Maybe this will be the year we both get one full time? I know it's just a tool, good way to think of it. But there is a stigma attached to using one, IMO, which is something we will have to get over one of these days.

I'm curious: what routine, helps, medication do you use to help with your fibromyalgia or other problems? My fibro is getting worse, along with arthritis, and nothing that used to work does anymore. Pain all the time. Just wondering what someone else who knows what I'm talking about does to help them.
thanks, ruth
As far as routines go, (both my adult daughter and I have been diagnosed - she was diagnosed at age 11!) just *sticking* to one, especially when we travel, is key. That means defined meal times, scheduled meds and above all else, getting plenty of rest - going to be on time, every night. It's not always easy, as I'm sure you are aware; at Disney World especially, its easy to lose track of time :)

What has helped me the most has been aquatic (pool, or water) therapy. I take regular physical therapy sessions, but all of my workout is in the pool. The pool at the PT place is kept heated *very* warm; it's typically between 97 and 98 degrees! When you first enter, it can feel almost too warm, but every time, by the end of my session, the water feels almost cool - no kidding. My therapist has a series of exercises that I do that are designed to help my arthritis, my fibro and some of my other neurological and physical issues; we even do balance work in the pool.

It's not for everyone, and not every PT place that has a pool has one that is heated that warm, and not every PT place that has a pool has someone who is really skilled at aquatic therapy. But, it has made a HUGE difference for me, and has meant that I can still walk and stand unassisted, and that I am no longer losing ground, and have made (very slow, but measurable) progress.

Fibro is a cruel and horrible disease, and I would literally take every bit of it in the universe if it meant that no one else ever had to suffer with it again.

When I am at WDW, we stay at the Resorts on site, and I get into that hot tub every night, (and sometimes again in the morning, weather permitting) to help my muscles stay loose - and I do a modified set of excerises there, just as if I was at home! :)

Your husband might take some of his cues from you - if you are reluctant to use an ECV, and talk about how you hate it, and how you don't want to use it, he may be (either consciously or unconsciously) adopting your attitude. Try talking to him about the "tool theory" (it removes a lot of the emotions attached to the discussion) and then I hope you both will know this:

You - either of you, or both of you - on a scooter at WDW is a total non-event. I promise. There are so many people who are on their phones, bragging on Facebook about their "perfect" vacation, or trying to find the next "Instagram wall" or taking selfies, or looking for the (fill in the blank with the latest and greatest "must have" millennial pink/unicorn/candy-colored food/drink/spirit jersey) item that no one will even notice you, on a scooter. Seriously.

Oh, and don't worry about seeing anyone you know at Disney World - because you have a better chance of getting hit by lightning *and* winning the lottery on the same day than you do of bumping into someone from home, unless they traveled with you.

And that whole "stigma" thing? Who cares? Certainly no one at Disney World. Just take a moment and look around - everyone there is so self-absorbed in creating their own perfect vacation that they really don't notice anyone else. So unless you (literally) run over someone, you will just be background noise to 99% of the folks there - just as you are when you are walking. No difference.

Use that scooter as a tool to do a job (the job is to carry you when you need an assist) and go on. Don't get hung up on the fact that you have to use a scooter. Instead, remember that if you *do* use a scooter, you will arrive back at your hotel room every night in less pain, and less exhausted, and more able to relax and enjoy your evening. Think about how great it will be at the end of a long day at MK to have a place to sit while you wait for the bus! And finally, know that Disney World is a use case all of it's own; no where else would you be expected to walk between 3 & 10 miles per day, with little to no shade for much of it, and little to no seating, benches or rest areas. It's not the "real world" that you live in at home - it's extreme in every sense of the word.

Don't feel guilty if he refuses to try using a scooter. Go ahead, and rent one for yourself, and just keep the phone number for your rental vendor handy in your smartphone for when he finally says he kinda wants to rent one too. :) Because if he sees that it is a *positive* thing for you, that may be all that he needs to make the decision. And if he decides to be stubborn, and refuses to use the best possible tool available for a completely non-standard situation? Well, then you may have to just let him go on, and limp his way through. But don't feel guilty for using all of the resources at your disposal to have the best possible vacation! :)

You can always rent the scooter(s) for just one trip, and try them. If you don't like it, or they don't help, then never rent them again...
 

disneyseniors

DIS Veteran
Joined
Jun 2, 2014
As far as routines go, (both my adult daughter and I have been diagnosed - she was diagnosed at age 11!) just *sticking* to one, especially when we travel, is key. That means defined meal times, scheduled meds and above all else, getting plenty of rest - going to be on time, every night. It's not always easy, as I'm sure you are aware; at Disney World especially, its easy to lose track of time :)

What has helped me the most has been aquatic (pool, or water) therapy. I take regular physical therapy sessions, but all of my workout is in the pool. The pool at the PT place is kept heated *very* warm; it's typically between 97 and 98 degrees! When you first enter, it can feel almost too warm, but every time, by the end of my session, the water feels almost cool - no kidding. My therapist has a series of exercises that I do that are designed to help my arthritis, my fibro and some of my other neurological and physical issues; we even do balance work in the pool.

It's not for everyone, and not every PT place that has a pool has one that is heated that warm, and not every PT place that has a pool has someone who is really skilled at aquatic therapy. But, it has made a HUGE difference for me, and has meant that I can still walk and stand unassisted, and that I am no longer losing ground, and have made (very slow, but measurable) progress.

Fibro is a cruel and horrible disease, and I would literally take every bit of it in the universe if it meant that no one else ever had to suffer with it again.

When I am at WDW, we stay at the Resorts on site, and I get into that hot tub every night, (and sometimes again in the morning, weather permitting) to help my muscles stay loose - and I do a modified set of excerises there, just as if I was at home! :)

Your husband might take some of his cues from you - if you are reluctant to use an ECV, and talk about how you hate it, and how you don't want to use it, he may be (either consciously or unconsciously) adopting your attitude. Try talking to him about the "tool theory" (it removes a lot of the emotions attached to the discussion) and then I hope you both will know this:

You - either of you, or both of you - on a scooter at WDW is a total non-event. I promise. There are so many people who are on their phones, bragging on Facebook about their "perfect" vacation, or trying to find the next "Instagram wall" or taking selfies, or looking for the (fill in the blank with the latest and greatest "must have" millennial pink/unicorn/candy-colored food/drink/spirit jersey) item that no one will even notice you, on a scooter. Seriously.

Oh, and don't worry about seeing anyone you know at Disney World - because you have a better chance of getting hit by lightning *and* winning the lottery on the same day than you do of bumping into someone from home, unless they traveled with you.

And that whole "stigma" thing? Who cares? Certainly no one at Disney World. Just take a moment and look around - everyone there is so self-absorbed in creating their own perfect vacation that they really don't notice anyone else. So unless you (literally) run over someone, you will just be background noise to 99% of the folks there - just as you are when you are walking. No difference.

Use that scooter as a tool to do a job (the job is to carry you when you need an assist) and go on. Don't get hung up on the fact that you have to use a scooter. Instead, remember that if you *do* use a scooter, you will arrive back at your hotel room every night in less pain, and less exhausted, and more able to relax and enjoy your evening. Think about how great it will be at the end of a long day at MK to have a place to sit while you wait for the bus! And finally, know that Disney World is a use case all of it's own; no where else would you be expected to walk between 3 & 10 miles per day, with little to no shade for much of it, and little to no seating, benches or rest areas. It's not the "real world" that you live in at home - it's extreme in every sense of the word.

Don't feel guilty if he refuses to try using a scooter. Go ahead, and rent one for yourself, and just keep the phone number for your rental vendor handy in your smartphone for when he finally says he kinda wants to rent one too. :) Because if he sees that it is a *positive* thing for you, that may be all that he needs to make the decision. And if he decides to be stubborn, and refuses to use the best possible tool available for a completely non-standard situation? Well, then you may have to just let him go on, and limp his way through. But don't feel guilty for using all of the resources at your disposal to have the best possible vacation! :)

You can always rent the scooter(s) for just one trip, and try them. If you don't like it, or they don't help, then never rent them again...

Thanks so much for the well thought out reply, much more than I expected!
I have tried water exercises, but that didn't work, even with gentle movements. I couldn't do anything for a week due to the pain. PT in a warm pool has never been suggested by any of my rheumatologists or MD's. I think because there isn't anyone who can work with fibromyalgia at this time in our area. I will check further about this on my next doctor visit. I'm so glad it works for you. I also try to keep the same routine at all times, with meals, and especially bed times. That is very difficult to keep up with at WDW. You are right, the whole place sets us up for increased pain, with the long walks just to get to the buses, and then to the park entrances, then the park itself, and then all that in reverse at the end of the day. Whew!

I know what you are saying that no one notices you while at WDW; it's so true. Especially when you are on a scooter. You become invisible to everyone but the CM's, who are wonderful. Thanks for taking the time to give me some words of wisdom. I hope we will both try an ECV this next trip. I have started an exercise program (sounds like a lot, but no), of treadmill for 30 minutes at a slow rate 3 x a week. I have 2 months before our next trip, and I hope that will get me into better shape and used to walking a little more.

The only thing that works for me is this routine: pain meds 3 x a day, which I can increase as needed, gentle yoga (a gentle routine which I developed over the years of yoga training, do all my shopping, etc in the AM, and must sit down and rest most of the PM, then up for supper with more pain by that time. That all helps keep the pain down, but not gone at all.

Thanks for listening to me and for all your help.
 


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