Anyone been with Fibromyalgia?

[tlrotzoll]

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

Glad you didn't let it stop you & that you had a good time!

 

[catsrule]

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

No ECV. I have no problem walking, I walk 3 miles 3 times a week at home. No, I don't take it slow. The adrenaline is flowing when I'm on vacation. I pop a couple of advil if I can't take the pain, but mostly I just try to ignore it.

 

[KPeveler]

just for the record - renting an ECV is NOT giving up your independence. I understand it is hard (I am 23 and accepting using a wheelchair outside of disney), but I spent months sitting at home by myself because I could not get out without pain. You are not letting the disease win if you use a wheelchair, you are letting the disease win if you dont do what you want to!

yes, it is hard but remember...

There is a difference between surviving Disney and ENJOYING disney!

 

[BrookeTx]

I too have FM. I have had it since I was 14 years old, but was diagnosed a few years ago. I am now 27.

I have really learned to live through the pain. I take pain meds during the most extreme pain.

I don't let is ruin my trip. I usually take it slow and my girls (who are 3 and 6) understand that sometimes mommy can't move as fast, etc.

 

[Ashton7]

I've had fibro for many, many years. Long before they knew what it was and finally diagnosed it officially. I diagnosed it myself, in the end, and then had it confirmed years later by neurologists and rheumatologists.

Anyway, for many years, especially when I was much younger, I always just walked when I went somewhere like Disney. Eventually I had to use a cane and I still do for day to day things. I'm okay just around the house but any amount of walking, I need the cane. It doesn't help that I have a bum knee and a bone chip in one ankle. I still walked when we went to Disney.

But the thing with fibro that is strange about the syndrome is that you can often do things in the moment ... and then you pay for them later. I would be okay walking around Disney and if I was in pain, I would take a pain pill. I'd rest when I could. But I'd make it through the day.

And then I would pay for having pushed myself for days or even a week. I would be in screaming agony, every muscle hurting and barely able to move.

So I finally tried renting an ECV one time. OMG! Bliss! I could move around the park easily and then I would park the ECV and get out to walk into shops or onto rides. But at the end of the day, even though I might be tired, I wouldn't end up paying for the trip to Disney by days and days of excruciating pain afterwards! I very rarely go to Disney without renting an ECV now. The down side is they have gotten very expensive. I am beginning to think it would be more cost effective to buy one of my own!

 

[Brian_WDW74]

I've moved this conversation to the disABILITIES! board.

 

[EstherS]

Is there any rides you find that you avoid?
That's one of my concerns!

I have Fibro and Myositis! So I know the pain all to well. We are taking MIL with us who also has fibro, but her's isn't in control.

 

[rillsung]

My MIL has fibro and often goes to WDW and DLR (couple times per year each). She too is too stubborn to rent an ECV, so I think she misses out on things sometimes... She doesn't want to give up her independence and feels like an ECV is giving up. She'll push herself too much one day and then have to stay at the hotel the next! She doesn't skip rides because of Fibro, I don't think, only because the coasters etc don't interest her.

 

[SueM in MN]

I guess this whole thread started out somewhere else, so welcome to disABILITIES, everyone.

If you check out the disABILITIES FAQs thread, you will find some links in post #2 to off-site companies that rent ECVs and wheelchairs.
Also, in post #3 of the same thread, there are some links that may be helpful.

 

[Ashton7]

Is there any rides you find that you avoid?
That's one of my concerns!

I have Fibro and Myositis! So I know the pain all to well. We are taking MIL with us who also has fibro, but her's isn't in control.

Well, I avoid some rides because I have a metal plate in my neck from spinal surgery (car accident). I try to avoid any rides that are really jerky but I can go on most of them. I don't think I've ever avoided any rides solely due to fibromyalgia.

 

[ireland_nicole]

I would like to agree strongly w/ KPevlar that renting an ECV is NOT giving up your independence, rather it's getting it. The fact that you're still going to WDW means that you're not just "giving in" to your fibro. I was diagnosed w/ Fibro 9 years ago, and now also have an unknown auto immune condition (like RA, but can't be dx'd yet; lots of swelling in the joints, though- good times). I just went to Disney again; we try to go every year. The last trip, I was starting from a higher baseline, and walked it (mostly pushing a stroller, b/c I could lean on it.) But then was in bed for a week after, and even the last couple of days were tough. This trip we bought a second hand ECV beforehand. Big difference. Yes, it's a pain sometimes, now my husband has to push the stroller all the time, etc. But it was so freeing to be able to enjoy the trip and not always think of the shortest way to get from A to B, or trying to hide how much pain I was in. I really feel that the ECV freed me to enjoy Disney. Plus, I did walk where I could. For instance, I parked in Fantasyland, and walked around the area, did the rides, etc. Then rode to Tomorrowland and did the same thing. That way, I still walked enough to keep from getting stiff, but not to excess. I also brought a heat pad, and it helps a lot too. HIH
Nicole

 

[SueM in MN]

My FIL had very bad hips and knees. He avoided using an ECV for many years because he felt he was not 'disabled enough' and didn't want to rely on an ECV.
The 'price' he paid for not using one included:
- being in pain every time he went to WDW.
- leaving the park early every day.
- ending the day with pain killers and ice on his knees.
- toddling along in the park from bench to bench.
- missing out on seeing attractions that were farther into the park than he could walk.
- missing out on seeing his grandchildren enjoying the attractions.

Once he finally decided to rent one, he spent his first pain free trip to the parks in many years and told us he felt sad to know how much he had missed by being pigheaded about not using one. With an ECV, he could go where he wanted to and didn't have to be limited by his pain and stamina.

Someone said once that wheelchairs and ECVs are like 'glasses for the feet.' I wear glasses; without them I can only see clearly about 6 inches in front of my face. If I told people I wanted to manage without glasses because I didn't want to become dependent on them, people would think I was being silly. Wheelchairs and ECVs are not really all that different than glasses.

 

[zumbergc]

Something to think about is if your in pain, that wears on you, and depending on what time of year you go. If its a hot season, hot + pain, is more to deal with. Having a great time in pain, isn't the same as being pain free and having a disney magic day. If you have kids or companions, and something isn't going quite right. Being in pain, does kind of put you a little less in the patience category, its a little harder to let small things roll off your back, and continue having a magical day. Things aren't always perfect at disney, but having the pain with you at all times, for me puts a damper on disney.

However, if you rent an ecv, think about being pain free, and going where ever you want, when you want. Lots of worries in the back of your mind are gone. You may not have to take afternoon breaks, will get to enjoy more park time, etc.

Personal experience. I cried the first time I had to use a wheel chair. But, after the trip no constant pain for a month or two afterwards, like in previous trips. So, now, I don't worry about the ecv. now, i don't like the wheelchair cause someone else pushes you, (if you don't have the incredible arm strength to do it yourself), and I like my independance so yes to the ecv.
If its a seasonal time, feel free to decorate your ecv, to make it fun. We decorate during the xmas season.

It doesn't matter how old you are, or anything. Ecv mean happier pain free trip than do it.

 

[tigger_03]

Something to think about is if your in pain, that wears on you, and depending on what time of year you go. If its a hot season, hot + pain, is more to deal with. Having a great time in pain, isn't the same as being pain free and having a disney magic day. If you have kids or companions, and something isn't going quite right. Being in pain, does kind of put you a little less in the patience category, its a little harder to let small things roll off your back, and continue having a magical day. Things aren't always perfect at disney, but having the pain with you at all times, for me puts a damper on disney.

I found this to be very true during our most recent trip. I didn't even know I had fibromyalgia then but I knew something was definitely going on. My whole body was aching and that was never a problem before. My patience were less (but that also had to do with my mom not being a good mood for most of our trip).

I will go on any future vacations dealing with fibromyalgia (I was just diagnosed). I don't know if I'll rent an EVC but if I hurt like I did in August I won't be ashamed or afraid to rent one. I continued to do things even though I was in complete agony in August and paid for it. If having an EVC means I'm not in as much pain and can enjoy myself and our trip then it's totally worth it.

 

[DisneyMim]

I've had fibro for four years now. We've been going to Disney forever and I've been probably around 8 times since I was diagnosed with fibro. Actually, for me it's better in the warm weather (I live in NE) so when I am in Florida I somehow feel better. Maybe it's what another poster said, magic and pixie dust!! I have never been a big " thrill" ride person so I don't go on any of those kind of rides. However, the rest of my family loves them, so I use that time to rest. Luckily a seat is never too far away at Disney so this helps very much. We are not early risers and not commando type people so we do Disney at a somewhat more leisurely pace. I take pain pills when I need them and just keep walking! I do walk at home as much as I can and I feel that this has helped me a great deal. I do not need a cane or wheelchair at this time, BUT I would not hesitate for a moment to use either one if it meant being able to spend time with my family. Everyone is different. You have to see what works for you. Just take it easy, and don't be too hard on yourself. Having fibro sometimes means you need to do things a little differently than you used to, but it will be ok.

Good Luck and Enjoy the Magic!!

 

[Haley Whippet]

Hello,
I also have FMS & CFS. (for almost 20 years) I always use a ECV at WDW, Would not do the parks without one.
I learned the hard way that it just wasn't worth it without one. I tried doing the parks on foot a few times & by the 2ed day I hurt so bad I could barley walk. I was miserable the rest of the trip. The past 5 or 6 years I brought my ECV & it mad all the difference in the world.. I feel more independent with a ECV because I can keep up with my DH & enjoy myself without killing myself. I have pain 100% of the time, I can live with the pain, But the degree of pain from trying to "walk the parks" is just too much..

 

[arminnie]

But in all seriousness, I agree with Chesire, I just cannot bring myself to do it, YET.

Honestly - it really is different at WDW. I don't want to use one at home - but I had no problem at WDW.

just for the record - renting an ECV is NOT giving up your independence....
yes, it is hard but remember...

There is a difference between surviving Disney and ENJOYING disney!

Someone said once that wheelchairs and ECVs are like 'glasses for the feet.' I wear glasses; without them I can only see clearly about 6 inches in front of my face. If I told people I wanted to manage without glasses because I didn't want to become dependent on them, people would think I was being silly. Wheelchairs and ECVs are not really all that different than glasses.

I love those two quotes.

CFS only here (so far). Sometimes I even question myself when I literally can't get out of bed from the fatigue. Having an ECV when I needed one made it possible for me to actually get to the parks when they opened instead of dragging myself there at 4 pm.

And having an ECV once doesn't mean you always have to have one. I didn't need one at all my last two trips. But I'll get one in a minute again when I need one.

 

[LindaBabe]

My MIL has fibro and often goes to WDW and DLR (couple times per year each). She too is too stubborn to rent an ECV, so I think she misses out on things sometimes... She doesn't want to give up her independence and feels like an ECV is giving up.

Thinking like this makes me WILD, WILD! I have fibro, and asthma, and I feel very strongly that using the ECV at Disney world GIVES ME MY INDEPENDENCE BACK! I'm FREE! I can keep up - or even lead some times! I can stop to take photos and catch up without losing the others. I'm not forever having to sit down and rest - or having the family taking baby steps so I can keep up. Thanks to the wheels for covering the ground, I have the stamina to get off and ride rides or stop and smell the roses if I want.

I don't use the ecv at home, although occasionally I will use one in home depot or the grocery store, and I worked a 40 hour week right up til I retired last spring.

Yes, you CAN carry on, through the pain, to the limits of your ability. But why? What's the payback? When the simple addition of a set of wheels will let you travel relatively pain free, and actually enjoy yourself rather than enduring?

 

[Haley Whippet]

Thinking like this makes me WILD, WILD! I have fibro, and asthma, and I feel very strongly that using the ECV at Disney world GIVES ME MY INDEPENDENCE BACK! I'm FREE! I can keep up - or even lead some times! I can stop to take photos and catch up without losing the others. I'm not forever having to sit down and rest - or having the family taking baby steps so I can keep up. Thanks to the wheels for covering the ground, I have the stamina to get off and ride rides or stop and smell the roses if I want.

I don't use the ecv at home, although occasionally I will use one in home depot or the grocery store, and I worked a 40 hour week right up til I retired last spring.

Yes, you CAN carry on, through the pain, to the limits of your ability. But why? What's the payback? When the simple addition of a set of wheels will let you travel relatively pain free, and actually enjoy yourself rather than enduring?

Well said!!!!!!!!!!!!!!!!!
I too feel FREE on a ECV!!!!!!!!!!!!
Deb

 

[SueM in MN]

Well said!!!!!!!!!!!!!!!!!
I too feel FREE on a ECV!!!!!!!!!!!!
Deb

I love to see my DD 'run' with her power wheelchair.