fibro - Did touring cause a flare?

[travelitis]

As our trip draws nearer I'm concerned about overdoing it at WDW and spending much of my trip having a flare up. I'll mainly use an ECV which will help, but I need to walk some, especially if I'm on vicodin. I'm curious if anyone else with fibromyalgia had difficulty touring. I had one active day of picking up the house, making supper, and playing Mom, then I crashed. I know we need to take things slowly, but anyone with fibro have comments to offer? Did you do anything particular to make WDW more comfortable? Was it harder to preserve your energy at WDW, or did adrenelin kick in and boost your energy?

 

[yoopermom]

I have no answers for you, but since my dear, dear father has fibro, also, and we're hoping he'll accompany us to WDW this year, I'm anticipating any replies you might get.

I used an ECV rented from the parks when I was there last summer, and still did as much walking as I felt like. Ex: in Epcot I parked the ECV at each country and then wandered around it on foot. If you're not renting an ECV from an offsite company, remember it can be quite a long walk within your resort, and then from the transportation dropoff points to the ECV rental within the park.

Hope you have a great trip!
Terri the Yoopermom

 

[Talking Hands]

I actually find the my fibro is less apt to flare at WDW than anywhere else. I am able to just chill out and enjoy things while I am there.
I use my power wheelcahir and tend to do things at my own pace and I have a wonderful time. It is the one place I feel I can let down and relax a bit. Best medicine in the world.

 

[Annette]

I been diagnoised with Fibro for 9 yr. now but looking back I have had it since I was 16 (44 yrs old now). We go to Disney at least once a year and as long as I can sleep at night I am okay. I believe my Dad has it too and we have had to push him in the wheel chair at Disney since his has been in his late 60's. One of my Dad's visits where he tried to walk in his 60's he ended up not being able to get out of bed at Disney at all. If you are on Vicodin you are unfortuantely suffering more than I am (at least for now). I guess I would say I would not take the risk of possibly spending your vacation in your room and rent the scooter.

Good Luck

 

[travelitis]

I am renting from Randy's Mobility, and I have to have the ECV because of a foot problem and now, fibro. I, too, know I've had it for years, but it just flared to the point of unbearable pain a few months ago. Before that I felt like I was aging way ahead of my time.

It's encouraging that WDW is the place you feel the best, Talking Hands. I'm hoping the Disney magic will have that effect on me. As I fight the frustration that simple, piddly tasks wear me out, and my kids comment that I'm usually sick, I wonder how I'll hold up for WDW. In July we took a cruise, and we had to cancel our plans in Belize and just relax on the ship, because we'd been diving the day before which is very exerting. I couldn't handle 2 days like that in a row. Luckily, we'd scored a suite with our own private hot tub. You know where we were!

 

[yoopermom]

I would never speak for others, but I think that for many people, especially ones with disabilities, WDW *is* where we feel the best! I think part of it is knowing what to expect, and how good you'll be treated. It's just like coming home...
Terri the Yoopermom

 

[Talking Hands]

Last December I was in a really bad flare. I could barely move, but I was still able to enjoy Disney. I could not walk more than about 10 feet at a time. I actually got worse before I got better. Thank God I fionally got out of that flare at the end of February. A long 5 months.
It was a bit funny because I had one of the interpreters for a conference in St Augustine in April and he was surprised to see me out of the wheelchair and walking again.

 

[travelitis]

I went through a long and bad flare recently, but my doc seems to have hit a good combination of medications for me. The cocktail is working and reducing the pain. I'm one of those people who hits Disney and wants to jump up and down I'm so excited, so I think it will energize me, too. I just don't want to be a burden to my dh, because we have 3 kids who need corraling. I can enjoy WDW even with the pain.

 

[catsrule]

I have had fibromyagia for 18 years now. I do not have a problem with it at WDW. I am used to the pain and have learned to live with it all these years, so it doesn't bother me. I will take advil occasionally for it.

 

[itscc2u]

Hi cant give you an experience at WDW since I have had to cancel the trip 2 years in a row.. but I can tell you what happened at Kings Dominion ...

Soen background ... I seldom post here been a member for awhile and some may remeber my problems I have Fibro, Lupus, Rheumatoid Arthritis, Kidney Disease and a few other diseases too.. Had neck fusion surgery this past May (still recovering) and now some type of mass on my liver casuing me to lose 65 pounds (needed to lose though) the mass is benign thankfully just bothersome

I rented a ECV at Kings Dominion it was a godsend in some ways in others it really didnt help because we discovered Kings Dominion is NOT very handicapped accessible , I took out a display of stuffed animals because the aisle was too small... This was in October kind of cool not hot... I was exhausted by 3 pm got there at 10:30 am and ready for a nap at 3:15 and I had to have my husband carry me out of the park ( i weighed about 280 at 5ft 11in) to my van to sleep until the others we were with were ready to go home...it put me into a BAD flare we think it was a combo of Fibro and Lupus not sure... i was in bed for 2 weeks and in and out of the ER 5 times.... At that time I had just started on the Duragesic Pain pacth at 25 MCGs which did me not much good.... I dont know about WDW but I had to carry additional meds with me and they gave me a hard time as they searched us as we went in, what are these for things that were none of their business so I handed them a letter from my loveable rheumatolgist explaining my needs god bless that Dr I love him ..

I am on some pretty heavy drugs now as I flare just sitting at the PC (woudl could explian why I am hardly posting anywhere anymore) , cooking dinner things like that.. I am on a Pain Pathc duragesic 50 MCGs now and I take both Vicodin ES 2 tabs with a Talwin for breakthrough pain...trust me it doenst always work.. I am on a first name basis with the Local ER staff, they see me coming they jump they know I'm in pain... I guess some people we flare easily others can go months with no flare up..me I am just thankful if I get one day every so often where I dont....

Just because I had a bad experience elsewhere doesnt mean you will at WDW, but I say this much keep meds on hand ,use that EVC at all times, if you need a nap take one , avoid the sun I think it interacts with some meds, you should see me the first time I overheated with the Patch on I was in bad shape lets just say I had to go to the ER.... Mainly try to have fun and I hope you have a very supportive family and friends with you, I think thats what saved me a lot of my frustrations in Kings Dominion when I had the accident with the stuffed animals they made it comical and alll....

right now I cannot forsee any trip to WDW or any amusement park got some reasons Money (lost $300 in DD when someone threw my rewards program goodies envelope away). My 4 yr old was just diagnosed with ADHD (dr refuses meds) and he is hard to handle and the fact my once supportive husband decided he loves me but can no longer live with me and my medical problems or sons issues and walked out on 19 yrs of marriage....sorry didnt mean to vent or get personal I'm handling it well.

Just have fun and rest, make sure you dont miss any medications, I take 30 meds a day and I know when I've forgotten to take something my body tells me...and THAT is the most important piece of advice I can give DO AS YOUR BODY TELLS YOU AND IF IT SAYS WHOA ~ SLOW DOWN once again HAVE FUN

Sorry so long a post just my insomniac steroid induced ramblings tonight Sorry so long

 

[travelitis]

Christine, I appreciate you insomniac ramblings. I'm sorry about your dh. I go to www.fibrohugs.com and have met others whose dh have deserted them over their health. Despicable.

I take all my meds before bedtime so I'll just have to carry vicodin with me. Just that won't raise eyebrows, will it? I tested positive on the test (can't remember the anachronym, something that starts wih an A) that indicates lupus, but my doc says my symptoms indicate fibro. He said a small percentage will test positive and not have lupus. I feel so sorry for those who have the whole menu like you.

Common sense says WDW will cause more fatigue and a flare. I'm hoping adrenelin and the pixie dust in the air will keep me going. Factor in the ECV, narcotics, and maybe an increased dosage of Vioxx that week, and I think I'll manage. I can handle a lot of pain to be at WDW.

I know we're discussing mainstreaming in another thread, but Christine is one of those people mainstreaming is no good for. There are those who need to be able to do more in less time because they have less quality time in a day.

 

[catsrule]

When I walk alot, my hips will start to hurt alot and I will take some advil for it. Other than that, I don't so slow down, I am much too happy!

 

[Talking Hands]

No it won't. I take 4 different pain meds of varying levels with me. Which I take depends on how bad I feel. As said before I do a lot of shows and I use my wheelchair. Do some walking on tours when I am up to it. I actually feel better at Disney. It is probably the lack of pressure to go go go. I can do stuff at my pace.

I'm in a minor flare now and I know it is stress from school. I am voicing in class and is nerve wracking. I got through the first time and I am feeling better. Now to do it the second time in 2 weeks. Plus I found out I was not the only one who was super stressed by this, The entire class is.

 

[Nutts4DVC]

I was dx in 2000 after we came back from our cruise/trip to WDW. I could not get off the couch for a month when I got back (at the time did not know what the problem was) thought I was just out of shape. We go every two years and we did our typical run run run that year. It wore me out.

We leave Jan. 10th for a two weeker and I am so afraid I will have a flare down there. Trying to do a rest day every other day but with 9 yr old twin boys it may not work so well. I told my DH that he may have to take them if I need to rest. I just don't want to ruin their trip.

I have posted this delima on the DVC boards as well the the clouds board and most people tell me to rent a scooter or if your feeling well one day to not use it. My question is do I need some kind of card to rent a scooter? We requested a third floor at Old Key West, there are elevators there but not sure who they let use them.

Any ideas?

Thanks,

Robin in Mi

 

[Talking Hands]

I would rent a scooter offsite and not depend on Disney for one. Conserve your energy. Relax and enjoy the shows. I can't wait for my trip in December.

 

[mamajoan]

This is gonna sound kinda weird but here goes...

It is nice to read about how Fibro affects other people. It is nice to read that others experience wide swings in pain and abilities during flare ups. It just makes me feel like I am not such an odd duck.

Thank you. Best wishes for tolerable days..
Joan

 

[travelitis]

Definitely rent that scooter! I'm using Randy's Mobility this time because the rate was so much better, and he said the equipment is all new. I couldn't walk the parks before fibro, having had reconstructive surgery on both feet. Anyone can rent a scooter.

 

[lindylou]

My daughter also has fibro, she has been taking a mild antidepressant which has helped tremendously. She seems to sleep better.

 

[jstan]

I too, have had fibro for about 15 years. When I go to Disney, I rent an ECV off site. They seem to manuver much better than the ones at the parks. The only problem that I had with them is riding on the transportation. Each bus only accepts 2 chairs or ECV's. Sometimes you have to wait. Relax and enjoy.

 

[mnmom22]

I was dx with fibro 2 years ago and went to WDW with my 7yo ds and neice last March. An ECV was my lifesaver. I actually have never enjoyed Disney more. I wasn't worn out trying to keep up with the kids. I rented offsite -- it was about $100 for the week. They delivered it right to our resort. They breakdown and go in a trunk if you're driving to the parks and the buses have lifts if you are using Disney transportation. The valet parking guys were wonderful about getting it in and out of the car for me. I also found that I didn't have as much trouble in Florida--I think the heat actually helped mine.