Anyone been with Fibromyalgia?

[ilovetivo]

bump
going in 2 weeks

 

[brighteyes]

bump
going in 2 weeks

Hi, I posted a few years back, before I was officially diagnosed. I think about a few weeks after that post, I was officially diagnosed with fibro.

Here I am two years later, and a lot worse than I was then. However, I still think it is doable. I had about three hot showers per day while at disney. One in the am then one in the afternoon when we got back to the hotel before dinner and one before bed. This one was a long one to relax my muscles. My calf muscles tend to seize up and heat is the only thing that makes them feel better.

I walked very very slowly. I rested in the park when I needed to. In hindsight I should have had an evc. However, like I said, stop when your body tells you to. I went to MVMCP at 7 and left by 11. Did I want to? Nope, could I walk any more? Nope.

Elevated my feet every night. I alternated crocs with flip flops and my running shoes with orthodics in them. They were new, so those hurt if I wore them too long.

I just did nto have days as long as I used to. I also found the ADRs helpful to have a rest as well. And whatever the ADR was that day, that's the park we were at.

I was on rx meds at the time, so Advil has never helped my fibro. Even still I had pain and swelling. I also spent two days in the room with DS just eating food court food from POP and being in bed and watching tv. It sucked, but I was still at Disney.

I also crashed when I came home and was in excrutiating pain for about 4 days. But it was worth it.

Good luck and enjoy your trip.

 

[ilovetivo]

Hi, I posted a few years back, before I was officially diagnosed. I think about a few weeks after that post, I was officially diagnosed with fibro.

Here I am two years later, and a lot worse than I was then. However, I still think it is doable. I had about three hot showers per day while at disney. One in the am then one in the afternoon when we got back to the hotel before dinner and one before bed. This one was a long one to relax my muscles. My calf muscles tend to seize up and heat is the only thing that makes them feel better.

I walked very very slowly. I rested in the park when I needed to. In hindsight I should have had an evc. However, like I said, stop when your body tells you to. I went to MVMCP at 7 and left by 11. Did I want to? Nope, could I walk any more? Nope.

Elevated my feet every night. I alternated crocs with flip flops and my running shoes with orthodics in them. They were new, so those hurt if I wore them too long.

I just did nto have days as long as I used to. I also found the ADRs helpful to have a rest as well. And whatever the ADR was that day, that's the park we were at.

I was on rx meds at the time, so Advil has never helped my fibro. Even still I had pain and swelling. I also spent two days in the room with DS just eating food court food from POP and being in bed and watching tv. It sucked, but I was still at Disney.

I also crashed when I came home and was in excrutiating pain for about 4 days. But it was worth it.

Good luck and enjoy your trip.

thanks!!!

 

[mommycrawford]

I do Disney with Fibro & CFS, and I have a couple of strategies that help ME:

I bring an umbrella stroller to both carry all my our stuff (drinks, autograph books, ponchos, etc.) and assist me with walking.

FASTPASS what I can, so I can sit instead of stand for long periods.

Bring peppermint oil/foot products to take care of my feet and cool off my system at night.

Swim...loosen muscles up after standing/walking.

USE the Railroad at MK and boats at EPCOT...conserve as much as possible.

Sit Down ANYWHERE I need to...waiting for Philharmagic, waiting for World Showcase Players, Dumbo, etc....

Have ADRs that meter out your time, so you are sitting in air conditioning and can project your resting times and alert times.

This is what helps ME....we all have different needs, but the stroller saves my life despite the scoffs of family (DD is 11.)

Listen to your body! You won't ruin anyone's trip...it is way better to skip an ADR or miss rope drop, than drop yourself!!!

 

[hematite153]

I bring an umbrella stroller to both carry all my our stuff (drinks, autograph books, ponchos, etc.) and assist me with walking.
...
Sit Down ANYWHERE I need to
...
This is what helps ME....we all have different needs, but the stroller saves my life despite the scoffs of family (DD is 11.)

Sounds like you've figured out a good system for you and your family to have a fun trip.

One thought that I had while reading your post was whether, given that your DD seems to have completely outgrown the stroller, you might be even happier with a walker of some form.

A properly fitted walker could provide even better support while walking, provide a place to carry all of your stuff and give you a built in seat that would even allow you to sit down while waiting in lines.

I know that there is a societal stigma of aging that is associated with walkers that doesn't exist with pushing a stroller for a walking 11 year old. But, having used a cane myself while at WDW I've discovered that these stigmas are not worth worrying about. If I have more energy because of my cane, then it's worth it. Yes, I can get weird looks because I can run one minute and might lean on a cane the next minute. But, they don't know my body and I do.

 

[emcclay]

Bumping this.

My mom has had Fibro for as long as I can remember. She always said she wanted to go to Disney World. I am taking both my parents to WDW this October. I am hoping I can come up with a good enough plan so that we get to do what the three of us want to, without exhausting my mom. Being the type of person she is, I know she will push herself too hard because she will feel as if she is holding my father and I back. Going to let her know over the next 8 months that it is fine if we need to bring her back to the hotel! Also, I feel like she has too much pride to take advantage of the wheelchair rentals. Anyone have experience with a similar situation? I just really want her to enjoy herself while we are there and not care what anyone thinks if she decides to go with a wheelchair rental.

 

[Cheshire Figment]

Please ask the following questions. Here are the suggested answers to go with them.

1. Are you disabled (even temporarily)? Yes.

2. Do the people you are traveling with, such as your family, know you are disabled? Yes.

3. Do you expect to meet anyone you know during this trip who may not know you are disabled. Probably No!

4. Do you expect to meet a bunch of people who you will probably never meet again in your life? Probably yes!

5. Is there any reason at all that you should care what these people think about you? Absolutely No!!

6. Will using a wheelchair or ECV make for a better vacation for you and your family? Absolutely YES!

First of all, pick a place about a mile from where your mother lives and ask her how difficult it would be to walk there. After a short pause, add "and back". The after she answers, say "four times in a row".

Then she will give you a look as only a mother can do to a child which implies "Are you out of your mind". Explain to her than most people tend to walk 8-12 miles per day at WDW. Once around the Epcot World Showcase Lagoon Promenade, is about 1½ miles. And that is without actually entering any of the pavilion areas.

 

[Haley Whippet]

Bumping this.

My mom has had Fibro for as long as I can remember. She always said she wanted to go to Disney World. I am taking both my parents to WDW this October. I am hoping I can come up with a good enough plan so that we get to do what the three of us want to, without exhausting my mom. Being the type of person she is, I know she will push herself too hard because she will feel as if she is holding my father and I back. Going to let her know over the next 8 months that it is fine if we need to bring her back to the hotel! Also, I feel like she has too much pride to take advantage of the wheelchair rentals. Anyone have experience with a similar situation? I just really want her to enjoy herself while we are there and not care what anyone thinks if she decides to go with a wheelchair rental.

Your Mom sounds just like me. I have had fibro for some 18 years. I am known to push myself & to be mule-headed when it comes to resting when we are at WDW. The one thing I have learned is to bring or rent a ECV (off site) & use it! It allows me to enjoy the day & not burn out so fast. It allows me to keep up with DH & who ever else may be with us. People are 99% kind & helpful to me. Trust me, everyone else at WDW is too busy enjoying their vacations to even give you a second thought. Feel free to ask me anything about traveling with fibro & using a ECV. I have been doing it for years..

 

[emcclay]

I asked her if she could walk 8 miles a day, and she did look at me crazy. She is still being stubborn about the ECV/wheelchair suggestions. I am planning on a break during each day of our trip when we can go back to the hotel and rest. It's tough because I want this to be really special for my family. I don't want her to not realize how big WDW actually is and be in pain the whole trip.

 

[hematite153]

I asked her if she could walk 8 miles a day, and she did look at me crazy. She is still being stubborn about the ECV/wheelchair suggestions. I am planning on a break during each day of our trip when we can go back to the hotel and rest. It's tough because I want this to be really special for my family. I don't want her to not realize how big WDW actually is and be in pain the whole trip.

Keep in mind every trip back to the hotel room is about 2 miles of walking by the time you walk your way out of the park to the bus or car (I actually find that the bus is usually less walking than the car). It's my opinion that the midday break is very useful for the normal person, but, not so useful for the person with Fibro.

I know that my Fibro is such that the lever for an ECV leads to massive pain within about 10 min of riding. Likewise, the need to sit all day would be worse than the pain of walking. (However, there are many people with Fibro who have found ECVs useful.)

For Fibro, I recommend shorter days or breaks within the parks over breaks outside the park.

I.e. I have found that if I hit the park at opening and spend 3-4 hours in it I can then go back to the resort, nap and take it easy the rest of the day. If I have more energy in me I do something less strenuous (like visit the pool) instead of returning to a park. (Note: I think I reach 8 miles in this 3-4 hour visit, a full day is much longer.)

If I do the shorter mornings only, then, I usually have the energy for a couple of evening park returns for dinner and/or parade/evening show, but, certainly not everyday.

The other version I've used (but, it should be kept in mind that I've run half-marathons with my Fibro, so, I know how to create endurance within it) is to spend a long day in the park, with a long break (or two) somewhere quiet with air-conditioning. Some of the QS restaurants can provide this, many of the TS restaurants are good for it and some attractions (like Hall of Presidents, Ellen's Energy Adventure) can even be dark enough for a short nap. When I do this, I don't go to a park at all the next day.

These are ideas and you'll need to work out what's best for your mother. But, if she looked at you like you were crazy when you asked about walking 8 miles in a day I wanted to point out that a midday break is NOT likely to cut it with Fibro. That midday break could work for the rest of you whereas it could be the end of her day. Or, you'll likely need another plan.

 

[kventventx]

I have had Fibro my whole life. As a kid I didn't understand how all the other kids could run and jump in so much pain and make it look fun. Later in life I was diagnosed and then realized I was the only one in pain and what they were doing was actually fun to them. I have been to WDW and DLR several times. I have not rented an ECV yet but learned my lesson the hard way when we went to London several years ago. Because of my pride I missed out on seeing things that I really wanted to see and do. If I need the chair I will use it. I find that eating well (yes, even at Disney) goes a long way in minimizing my pain levels. If I eat junk food my recovery is slowed as well as lowering my energy level. I wear good shoes with custom made orthotics in them so that my whole body is supported when I walk. Everyone with fibro reacts different and it is most important for you to determine what works for you and them build that into your plan. If it's frequent breaks make sure you take them. If you are happy your trip will be better and those traveling with you will have a better time too. My DH is always worrying about me when we travel and whenever I can make him worry less on vacation I do.

Drink lots of fluids. If you get dehydrated (even a little) it will spike all your pain triggers. Take care of yourself. And, most of all have fun!

 

[toocherie]

I am known to push myself & to be mule-headed when it comes to resting when we are at WDW. The one thing I have learned is to bring or rent a ECV (off site) & use it! It allows me to enjoy the day & not burn out so fast. It allows me to keep up with DH & who ever else may be with us. People are 99% kind & helpful to me. Trust me, everyone else at WDW is too busy enjoying their vacations to even give you a second thought. Feel free to ask me anything about traveling with fibro & using a ECV. I have been doing it for years..

The first sentence made me giggle! I agree about the offsite ECV use--I could never make it with fibro without it. Even around the resorts.

I asked her if she could walk 8 miles a day, and she did look at me crazy. She is still being stubborn about the ECV/wheelchair suggestions. I am planning on a break during each day of our trip when we can go back to the hotel and rest. It's tough because I want this to be really special for my family. I don't want her to not realize how big WDW actually is and be in pain the whole trip.

I agree with the mid-day poster that a mid-day break may not be the best idea for someone with fibro. For me, if I go back to the resort I'm pretty much done for the day. I am going with girlfriends in a couple of weeks, and some days will probably meet up with them later in the day rather than go all commando like they will be doing. Even on an ECV I will burn out and be in pain.