Disney with Fibromyalgia

[North of Mouse]

It will definitely be worse if you don't make yourself move, but I won't lie. Sometimes, it is really hard. You'll hear that it's all in your head, you don't look sick, etc. I even had an aunt tell me mine must not be too bad because I don't talk about the pain as much as she's heard some others do. My answer was, "Why remind myself constantly that it hurts?" Yes, you'll hurt all the time, it will just be how intense is it. Sometimes, you just can't function. Sometimes, you just deal with it. I learned from a friend who has dealt with arthritis since he was in his 20's. He runs, bikes, does triathalons. I asked how does he do it when I know he has to be hurting so badly. His answer was that he can lay on the couch and hurt or he can move and be healthier and hurt but hurt less.

This is me - I absolutely refuse to give in to it and let it ruin my life. It is not fatal,(just feels like it is - being beat up, or run over by a truck ) and I garden even in pain because I love it so. My pain is worse at night and mornings - so my most consideration is trying to get enough sleep. I literally "roll" out of bed most mornings and start moving around slowly even though my body says NO Gradually my day gets better and I am like this young man - I do what I want because I WILL have pain, so I'm not going to let it get me down. Not too many people know about my pain because I'm a good "pretender". Giving in to it and laying down during the day actually makes me hurt worse, as I have to get up twice a day instead of once My Rheumatologist says exercise and attitude are the best meds for fibro, and she is right in my case - says the patients she has that have the worst times are the ones that won't keep moving because they hurt. When I was first diagnosed, I had all the 18 pressure points severe pain, and she said I had it about as bad as anyone she's seen. But because of her excellent advice, my flare ups are easier to manage and I live a basically normal life. It's hard but to all who have it!

 

[North of Mouse]

I looked up as well, and I agree with you. I have an appointment with a
Rheumatologist in May so hopefully she can answer my questions. I plan to start walking soon; I don't want to push myself that's the main things I've read so far is to start slow! Thanks so much for all the great advice you have given me!!

Did a Rheumatologist not diagnose you with fibro? None of the other doctors I went to had a clue what is was (all in my head, etc. inferred) until a neurologist finally told me I should see a rheumatologist and it was immediately apparent to her what I had. Guess I thought that the dr. you had seen was a rheumatologist. I was never told not to walk or push myself, actually right opposite, because that's the only way I can move a lot of times is to push myself

 

[disneychic2]

I have had fibro for many years. I thought I had arthritis, but didn't. I go to Disney every year and have never had an ECV or WC. Like others have said, it becomes a way of life to be in pain every day. Most people have no idea that I am in pain. I have been blessed with a high tolerance for pain, so that certainly helps. I love the advise from North of Mouse. She said most everything I was going to say. I go to the gym 4 times a week and do strength training and cardio. When the weather is nice, I walk outside. I have had a few times when I couldn't function, but mostly just do a little housework, then rest a bit. I'm really good at the resting! You'll get to know your limits...how much you can do without over doing. I'm so sorry you are having this so young. But, it doesn't have to define who you are. You sound like a sensible young lady who is approaching this with grace and determination. Don't lose that. Some days will be hard. In fact, give yourself permission to loose it once in a while. BTW I don't take any meds either. I am, however getting ready to embark on an almost completely plant based diet, limiting my meat, fish and poultry. It is said that this will help every part of your body to function better. I figured it was worth a shot, right? So, go to Disney, have a wonderful time and celebrate life! Best of luck to you!

 

[DisneyGirl201017]

Did a Rheumatologist not diagnose you with fibro? None of the other doctors I went to had a clue what is was (all in my head, etc. inferred) until a neurologist finally told me I should see a rheumatologist and it was immediately apparent to her what I had. Guess I thought that the dr. you had seen was a rheumatologist. I was never told not to walk or push myself, actually right opposite, because that's the only way I can move a lot of times is to push myself

A physical medicine doctor diagnosed me; the rheumatologist wasn't available until May. I had all 18 of the points, but I still have my appointment with the rheumatologist.

 

[DisneyGirl201017]

I have had fibro for many years. I thought I had arthritis, but didn't. I go to Disney every year and have never had an ECV or WC. Like others have said, it becomes a way of life to be in pain every day. Most people have no idea that I am in pain. I have been blessed with a high tolerance for pain, so that certainly helps. I love the advise from North of Mouse. She said most everything I was going to say. I go to the gym 4 times a week and do strength training and cardio. When the weather is nice, I walk outside. I have had a few times when I couldn't function, but mostly just do a little housework, then rest a bit. I'm really good at the resting! You'll get to know your limits...how much you can do without over doing. I'm so sorry you are having this so young. But, it doesn't have to define who you are. You sound like a sensible young lady who is approaching this with grace and determination. Don't lose that. Some days will be hard. In fact, give yourself permission to loose it once in a while. BTW I don't take any meds either. I am, however getting ready to embark on an almost completely plant based diet, limiting my meat, fish and poultry. It is said that this will help every part of your body to function better. I figured it was worth a shot, right? So, go to Disney, have a wonderful time and celebrate life! Best of luck to you!

Thank you so much! I feel much better about "my new way of life" after talking with all of you about fibro. I haven't really had it long enough to learn my limits and what I can and cannot take so I am excited to learn this and prepare myself for what's to come. I've read that certain diets will help and I was planning on trying one myself!!Thank you again for the advice, I'm taking it one day at a time and I think that's the only thing we can all do.

 

[DisneyGirl201017]

I also have fibro. The reason we originally started staying onsite was because of it. I needed to be able to leave whenever I started getting miserable. I never wanted to interfere with the rest of the family's vacation and knew I was always just a bus, monorail, or boat ride away from being able to lay down. DH always goes back with me and either reads, swims, or goes to the workout center. I was diagnosed after having viral meningitis 12 yrs ago so we've gone several times since then. I tried Savella, but could not stay on it. It made me extremely depressed. Really. I struggle with muscle spasms and pain as well as connective tissue around the joints. I haven't had to use an ECV or WC except in 2009, but that was when I had broken my neck and ribs. For me, DH just knows that we go at my speed. We go slower than we used to, but we go often enough we now longer feel like we have to do the 100 yard dash everywhere. I do have to resort to pain meds and muscle relaxers at times. I woke up every night with leg and foot cramps before the muscle relaxers. The prescription strength of aleve is 2 (Naprolen, Naproxin) so I try that before I take any pain meds. It will definitely be worse if you don't make yourself move, but I won't lie. Sometimes, it is really hard. You'll hear that it's all in your head, you don't look sick, etc. I even had an aunt tell me mine must not be too bad because I don't talk about the pain as much as she's heard some others do. My answer was, "Why remind myself constantly that it hurts?" Yes, you'll hurt all the time, it will just be how intense is it. Sometimes, you just can't function. Sometimes, you just deal with it. I learned from a friend who has dealt with arthritis since he was in his 20's. He runs, bikes, does triathalons. I asked how does he do it when I know he has to be hurting so badly. His answer was that he can lay on the couch and hurt or he can move and be healthier and hurt but hurt less.

This is the attitude that I am trying to have and I can only hope it will work for me! We are trying to stay at the Poly for our next trip so we can have easy access to our hotel for me to rest up and then try and get back into the magic! Thank you so much for the advice; I am defiantly taking it all in!

 

[DisneyGirl201017]

I have fibro, among other things. I think alot will depend on your group. For the longest time, I refused to use an ecv. I would have a day at the park and then need 2-3 days to recover from that one day. I was trying to keep up with my 3 children. It wasn't until I did a trip with my mother. She was the one who convinced me to get one. The key for me has always been to pace myself, and I wasn't doing this at Disney WITH my children. I did do a trip alone with my husand once and we decided to take a wait and see approach. Since it was just the two of us, I was able to take my time, stop for frequent breaks, etc. I was tired, but not wiped out. I was able to do the trip without the ecv.

You know your body and I don't think that there is a "one size fits all" answer regarding using ecv's. I have used Apple Scooters and have had no problems with them. They drop it off at bell services the day I arrive and I leave it at Bell Services the day I leave.

Thank you! This is our plan so far, see how to first day goes in the parks and if I'm really hurting we will rent an ECV if needed, I won't suffer and have a miserable vacation if I can do something to stop it. But hopefully I can take it slow and I won't need one! Thank you for the advice and the suggestion for Apple Scooters, I am going to look them up!

 

[North of Mouse]

I have had fibro for many years. I thought I had arthritis, but didn't. I go to Disney every year and have never had an ECV or WC. Like others have said, it becomes a way of life to be in pain every day. Most people have no idea that I am in pain. I have been blessed with a high tolerance for pain, so that certainly helps. I love the advise from North of Mouse. She said most everything I was going to say. I go to the gym 4 times a week and do strength training and cardio. When the weather is nice, I walk outside. I have had a few times when I couldn't function, but mostly just do a little housework, then rest a bit. I'm really good at the resting! You'll get to know your limits...how much you can do without over doing. I'm so sorry you are having this so young. But, it doesn't have to define who you are. You sound like a sensible young lady who is approaching this with grace and determination. Don't lose that. Some days will be hard. In fact, give yourself permission to loose it once in a while. BTW I don't take any meds either. I am, however getting ready to embark on an almost completely plant based diet, limiting my meat, fish and poultry. It is said that this will help every part of your body to function better. I figured it was worth a shot, right? So, go to Disney, have a wonderful time and celebrate life! Best of luck to you!

Agree with 100% also!