Fibromyalgia, ECV and rollercoasters

[OCDPlanner]

This will be my first time using an ECV, ever. I've come to the realization that I will have to, if I want to be able to enjoy my vacationl.

I have fibromyalgia and it's gotten to the point that I can't stand or walk for more than 10 mins. Here at home I just cope/ignore the pain.

The whole reason for this vacation is to take my 14 y/o DD to ride all the rides (especially rollercoasters) that she was to little to ride last time (1995) and that I want to ride again.

We'll just skip the whole question about me being crazy to get on the wild rides in my "condition". My doctor has already expressed his opinion about it.

I just want to make sure that I won't have any problems with CMs letting me on the rides? If you choose to disregard the posted warnings, that pretty much means "on your head be it", right?

Thanks,
OCDPlanner

 

[SueM in MN]

There are warnings on the park maps, at the entrance into each queue, at some point while you are in the line and also before boarding.
Disney's attitude seems to be that they will warn you, but it's up to you as an adult to decide whether or not to heed the warning. We were not questioned at all on taking DD on TOT, Space Tours, Safari or Test Track. We also saw pregnant women getting on these rides (with warnings against riding during pregnancy).

 

[Mazzy]

Hi

It was my first time using an ECV last September. I'm sure you will be perfectly fine with it, as I was.

I really hope you enjoy your trip. If you do a search for EVC you will find lots of useful info.

 

[OCDPlanner]

I did find the list of rides and info on how/where to queue w/ ECV. I'm already working that info into my daily schedule.

I've been to WDW w/ my Mom in an ECV, but she never did any of the wild rides, so the issue never came up before.

Thanks bunches
OCDPlanner

 

[capegirl]

I have Fibromyalgia too. I have a 16 year old DS who I have to keep up with, and if I'm having a bad day I always rent an ECV.
I have been on all of the rides with no problem at all. I will admit that I was embarassed when I first rented an ECV. Even though I am in significant pain, I look perfectly healthy. I even felt guilty about using the special entrance for ECV's ....but this soon passed. One word of caution....when you are driving an ECV, you have to be especially watchful in crowds. It always amazes me when people walk right in front of you as you are driving along, its as though you become invisible.

 

[OCDPlanner]

Capegirl,

I've been practicing with my mom's ECV. I've only clipped a doorframe in the house once or twice. DD says she will be walking behind me.

Relieved to hear that I'm not the only one who feels embarrassed (and guilty most of the time) for being in pain but looking young and healthy. Ever feel like you should tape a sign to your chest that explains your condition?

What do you do to help with the pain/to relax your muscles when you're through for the day? Any good hints?

Thanks lots!
OCDPlanner

 

[capegirl]

OCD Planner,

When I wake up in the am I never know what joint/muscle will be "the one" for the day. Right now its in my right hip, and the pain shoots down behind my knee. When I do alot of walking my ankles become terribly stiff and painful. I have discovered that my symptoms become worse when I am under alot of stress.
I have tried taking muscle relaxers at bedtime, but I feel wiped out the next day so I can't take them anymore.
Massage therapy and heat seems to work best for me. One of my biggest problems is the "fibro fog" that hits me around 2pm everyday...its like a wave of exhaustion passes over me.
Fibromyalgia is a much misunderstood illness, because it is invisible. Even my own family members have difficulty understanding why I am so fatigued all of the time because I look fine on the outside.
I hear they are doing alot of research on Fibromyalgia at Maclean Hospital in Belmont, MA....they are experimenting with a new drug. Let's hope it can someday help all who are suffering with this condition.

 

[OCDPlanner]

Capegirl,

I recently came across an article in Women's World for something new to try. They're called Serotabs. It's a supplement to raise your serotonin levels which might help alleviate some symptoms (such as not getting that deep sleep that we need for the muscles to repair themselves). I've placed my order and I'm waiting for them to arrive. Boy, do I hope they help!

If you'd like to check it out (and please understand, I'm not trying to push anything on you) the website is www.serotoninhealth.com. Where did you read about the research at Maclean Hospital?

OCDPlanner

 

[capegirl]

OCD Planner,

I hope the Serotabs are helpful, I would be willing to give anything a try. My rheumotologist has had me on various antidepesssants which are believed to raise your serotonin levels, however I did not respond well so I'm back to square one.
I inadverdently discovered that McLean (spelled wrong the first time) Hospital is doing research on Fibro when I visited their website to seek help for my daughter who suffers with suicidal depression and anorexia, (this is the source of my stress). From what I gathered it looks as though they are in the process of beginning a clinical trial with Fribo patients to try this new med.
Their website is www.mclean.org. When we come back from Disney (my best therapy of all), I might give Mclean a call.

 

[Earstou]

OCD Planner and Capegirl,
I have Arnold Chiari Malformation I, a neurological condition that is sometimes misdiagnosed as Fibro. Since my ACM surgery, my pain has decreased, but I still have problems.
I have used the muscle relaxants too, and also had problems with being wiped out the next day. Finally my doctor found one that doesn't knock me out, I can even take it during the day without falling asleep (and I have alot of problems with getting sleepy from meds!).
I'm now taking Skelaxin. It's not a cure, but it is the only thing I have found so far that helps me.

 

[OCDPlanner]

Earstou,

I had to do a quick search about your condition, I had never heard of it before. I'm glad that having the surgery done has helped you find some relief.

My problem with muscle relaxers is not that they make me sleepy or foggy, it's that they just don't seem to work and, since I no longer have insurance, finding something that doesn't cost me a fortune. Right now I'm "making do" with Zanaflex.

That's why I'm hoping that the Serotabs I've ordered (if they ever get here) will help. It seems that a serotonin defiency is related to so many conditions (Fibro, CFS, migraines, depression, etc).

Good luck to us all!

PS: Wonder how much a massage at the GF cost!

 

[mommyseven]

I have Fibromyalgia as well. We are planning a week-long trip to WDW in Oct/Nov, but I am beginning to get concerned. Last weekend we took the children to the zoo. I made an effort to sit often and not stand on my feet more than necessary. I wasn't over tired or anything. But later that night I almost couldn't walk. I was wiped out almost the entire next day. I just never know how my body will react.

I've never used an ECV. Mentally I am finding it hard to accept that I may have to. For me, it seems as if I am giving up and letting the disease take-over. If I don't, I am concerned that I won't be able to participate. It's hard to make that choice for the first time. I don't want my family to feel inconvenienced either (or anyone feeling embarrassed having to wait for it to be loaded on a bus).

I take Flexeril when the pain gets really bad at night or if I get a migraine. It usually gives me a "hangover" the next day. Often I just have a fourth or a half it is bad.

Fibromyalgia is a nasty invisible disease. It still isn't accepted by most.

 

[Cheshire Figment]

Originally posted by mommyseven
I've never used an ECV. Mentally I am finding it hard to accept that I may have to. For me, it seems as if I am giving up and letting the disease take-over. If I don't, I am concerned that I won't be able to participate. It's hard to make that choice for the first time. I don't want my family to feel inconvenienced either (or anyone feeling embarrassed having to wait for it to be loaded on a bus).

If you don't want your family to be inconvenienced, get the ECV! As far as making thm embarrassed, if any of them are teens they are automaitcally embarrassed by your very existence (and their being with you). I have found that using an ECV allows me and those with me to enjoy WDW a lot more than when I could not walk as well as I used to and had to rest often.

 

[OCDPlanner]

Mommyseven,

Believe me, I understand exactly what you're saying about feeling like you're giving into the Fibro. I went back and forth before deciding that I would use an ECV for this trip.

DD and I did a small local park last summer, three hours into the day I was almost crying from the pain. Poor DD finally said "Momma, let's just go back to the hotel."

And while we've reserved a lovely villa (I hope) at Parkway International....I'm paying alot of **** money for this trip. I WILL enjoy myself.

After all, what's a little pride compared to lots of fun.

OCDPlanner

 

[McCall]

Mommyseven,
Now see I look at it exactly the opposite from the way you do. To me any sort of aide I can use that makes it easier or possible for me to do the things I want to do is Not letting my disease win.

If I can't do grocery shopping [as an example] without using my ECV so then I don't do it and someone else must, isn't that letting the disease beat me? Using it is NOT letting it beat me.

Use whatever lets you live the way you want to live, and don't be the least bit embarrassed or ashamed of it!

 

[Btroyi]

Mommyseven,

It took me a long time and a wonderful wife to understand the difference between using the tools available to live and enjoy life, and giving in to the disease.

I have Sjogrens syndrom which causes Transverse Mylitis in me and effectively paralysis me from the waist down. This disease comes with serious fatigue. The first time I saw my brand new wheelchair it scared the hell out of me! But with time and again, a wonderful wife, I have learned that tools are there to make life liveable and enjoyable again and there is no reason in this world to be embarrassed about using them!

Just FYI, My Wife was just diagnosed with Fibromialgia(hope I spelled that right) and will be using an ECV when we go to Disney in December. We will be renting one from a local company though to eliminate the issue of having to turn them in and get another one at another park when moving from park to park. God forbid they be out of them, that would be the end of the day for her.

Best wishes,

Btroyi

 

[mommyseven]

Thank you, everyone, for all the great advice, support, and encouragement. I am starting to feel better about the possibility and am considering using an ECV more than I did before posting.

I have to go to Orlando for a business trip the end of May. While I won't be going to the parks I will be visiting DTD. This trip will require a lot of walking and standing (convention). I'll certainly get a better idea as to whether I can do my WDW trip without a ECV after I go through this convention. I think that I should see if the resort that I am staying has a ECV...just in case.

Thanks again!

 

[SueM in MN]

Some resorts have wheelchairs to lend out, but I have not heard of any that have ecvs (I know that Disney says in their printed material that they don't). So, you may want to take the numbers with you so you can call one of the rental places whiel you are there in case you need it.

 

[lcjones70]

My sister has fibromyalgia too and rented a ECV when we went last July 2003. I was very disappointed, in this the 21st century, at the stares we got while riding through the parks and the angry looks when people had to wait for the bus driver to let her on the bus first (they didn't think about how we would be the last ones off). I think parents should take this opportunity in a tactful way to teach their children to be patient and perhaps helpful if they can in anyway.

The CMs were all very nice which kinda made up for the rude people we encountered. The only thing I would like changed is how you have to change over to a manual wheelchair when you ride TOT and RRC. It was a bit challenging pushing her in the wheelchair up the ramps, but we managed and I wouldn't have rided unless she could have come along with me some way. We hadn't been to WDW together since 89 when we were 19 & 21...we had a blast in our own adult/childlike way...lol.

Laurel

 

[SueM in MN]

Thanks for sharing about your trip, lcjones70.
And welcome to disABILITIES.
I'm not sure why they didn't plan better for the entrance of the 2 rides you mentioned. They are some of the more recent rides, so you would think they would plan that at least some people with ecvs would be using them.
As for staring, it is true that some people are just palin rude. But, usually for every rude person, you find a whole bunch of nice ones.