Fibromyalgia

[Making Magic]

Anyone who suffers from this care to share their Disney experiences? Particularly interested in sleep disruptions. Thanks!

 

[hematite153]

I can tell you things from a bunch of different perspectives.

But, my biggest piece of advice is: know your Fibro and make a plan that works for it. (We're all a bit different and we need to respect that.)

I have two standards:
- Long park days with at least one guaranteed day off between them.
OR
- Rope drop and a heavy morning combined with a long lunch break and a relaxing afternoon/evening.

As for sleep disruptions.... I generally sleep less well away from home, but, I have sleep cycle problems on a periodic basis anyway. (I think there's a tie-in to my menstrual cycle actually.)

I find that elevating my legs while sleeping can make quite a difference and sometimes get frustrated that there aren't enough pillows in the disney rooms.

If you're interested in sound (and other) interference, this depends a lot on resort and location within the resort. So, I'd think about what you need and then think about how to increase the odds of getting it.

I've found that Valerian can make a big difference if I really need to sleep well at a difficult time, but, make sure you have time for a full 8-9 hours of sleep after you take it.

I can't really take afternoon naps and get going again unless I have time for the nap to be a full sleep. So, I don't try to go back out in the evenings very often. If I want to make it to the end of the night, I just slow down for the afternoon and take it easy somewhere without sleeping.

I'm happy to answer specific questions, but, the random decision of what information you'll most benefit from isn't my strong point.

 

[OneLittleSpark]

Another Fibromite here . I actually find that my symptoms ease up a fair bit at Disney; probably a combination of the sunshine and Disney magic !

As Hematite said, sleeping tablets can help a lot. I use herbal tablets with Valerian in, and I feel a lot better when I take them than when I forget. I suggest you experiment with these before you go, just in case you get any side effects (usually it's just drowsiness during the day).

For me the routine that works the best is actually get a late morning, then play on into the night. Basically, what you need to do is listen to your body, and make sure you have a plan flexible enough to work around whatever you need today.

To help combat sleep disturbances, try and relax and calm yourself as much as you can before bed. Using the hot tub is a wonderful way to undo all the knots you've worked up over the day, or a hot bath is good if you can't manage the trip to and from the hot-tub. Take some time to wind down after you get in from the parks, so that your brain isn't buzzing when you go to sleep. Some people find meditation helps, others just like relaxing with a book - whatever works for you! Doing some gentle stretches will also help to loosen your muscles, and may help reduce spasms and twitches.

While you're touring the parks, do everything you can to keep your pain levels to a minimum. A wheelchair or an ECV is pretty much a must if you have leg, foot or ankle pain. Have a decent supply of any pain meds that work for you, as well as any prescription meds your on.

Make sure you eat well while you're there. Fibro bodies are even more sensitive to these things than TAB's (temporarily able bodied), and the change of location, routine and bed will be enough to throw your body off. Try and get your 5 a day of fruit and veg; eat regular meals; avoid sugar and caffeine before bed; and keep some snacks with you at all times, in case your blood sugar crashes when you're in a line.

Hope this helps!

 

[hematite153]

For me the routine that works the best is actually get a late morning, then play on into the night. Basically, what you need to do is listen to your body, and make sure you have a plan flexible enough to work around whatever you need today.

See, proof-positive that we're all a bit different in terms of what works. Even if I sleep in, trying to go late into the evening is challenging for me. So, getting going early and then just letting myself calm down later is better. (Or, as I said, I can do a FULL long day as long as I take a break the next day.)

While you're touring the parks, do everything you can to keep your pain levels to a minimum. A wheelchair or an ECV is pretty much a must if you have leg, foot or ankle pain. Have a decent supply of any pain meds that work for you, as well as any prescription meds your on.

Again, I'd test the wheelchair/ECV plan carefully at home in advance. If I were to sit in a w/c that someone else pushed, I'd end up very stiff from lack of movement. I generally thought that I could make an ECV work (because I could shift around without messing with it's forward movement), but, then, I tried one once for about 10 min and was in agony from the need to hold the button/lever down in order to move. I doubt I could manage to use an ECV for even a full hour. But, many people with Fibro would echo OneLittleSpark's recommendation.

We're all a bit different. The better you know your own Fibro and the more you plan around it the easier the trip will be.

 

[OneLittleSpark]

See, proof-positive that we're all a bit different in terms of what works. Even if I sleep in, trying to go late into the evening is challenging for me. So, getting going early and then just letting myself calm down later is better. (Or, as I said, I can do a FULL long day as long as I take a break the next day.)

Fibro is a weird condition, and what works for one Fibromite could be utterly useless for another!

Again, I'd test the wheelchair/ECV plan carefully at home in advance. If I were to sit in a w/c that someone else pushed, I'd end up very stiff from lack of movement. I generally thought that I could make an ECV work (because I could shift around without messing with it's forward movement), but, then, I tried one once for about 10 min and was in agony from the need to hold the button/lever down in order to move. I doubt I could manage to use an ECV for even a full hour. But, many people with Fibro would echo OneLittleSpark's recommendation.

We're all a bit different. The better you know your own Fibro and the more you plan around it the easier the trip will be.

I forgot to say, I've also got CMP in my ankles along with the Fibro, and that's the first thing to start hurting me. I now use a manual wheelchair outside the house, because even just 10 minutes of walking leaves me in agony for a few hours (or sometimes days) afterwards. Fun, fun, fun .

At Disney, because the sunshine seems to keep my fatigue in better check, I can self-propel most of the way around the parks. However, I wouldn't recommend that to anyone not used to self-propelling, as it does take a fair bit of muscle, even on the comparatively flat surfaces of Disney*.

I'm not sure if I could cope with driving an ECV, as I also have wrist issues (CMP again) and my hands tend to cramp after a while. The fatigue also means my reactions are a bit slower, and I wouldn't want to 'test them' with a small child running in front of me .

If you have someone who could push you in a manual chair, you could alternate between walking and wheeling, as your joints dictate. I suggest you rent from an off-site company, as their chairs tend to work out cheaper, can be used at your resort, and are usually more adjustable to fit each person's body shape (the Disney ones play havoc with my joints!). I'd also suggest you make sure you have a decent wheelchair cushion, as this not only makes things easier on your backside, but also your hips and back.


*Please note, Disney is not 'flat', and there are a fair few up and down slopes about the place (some pretty darn steep!), but I trained up on the Exeter hills, so in general Disney is fairly tame for me.

 

[brighteyes]

Fibro is a weird condition, and what works for one Fibromite could be utterly useless for another!

I forgot to say, I've also got CMP in my ankles along with the Fibro, and that's the first thing to start hurting me. I now use a manual wheelchair outside the house, because even just 10 minutes of walking leaves me in agony for a few hours (or sometimes days) afterwards. Fun, fun, fun .

May I ask, what is CMP? Thank you. I have terrible pain too, in my ankles, up through the arches in my feet, and most especially, my calf muscles will tend to seize if I am walking too much, too far, or too fast. I also wear orthodics and running shoes, which I hate, because I am a flip flop girl at heart. RIP to my flip flops.

 

[brighteyes]

Anyone who suffers from this care to share their Disney experiences? Particularly interested in sleep disruptions. Thanks!

Well my sleep disruptions at Disney were few and far between, I had a corner room at the far end, and usually stayed awake long enough that if anything would have bothered me I slept through it. A little amitriptilyne never hurt anyone either.

As far as doing disney, my first experience was by far easier to handle, I wore TEva Mush flip flops the whole trip and was fine. As far as energy goes that wasn't too bad either.

The second trip was a little slower going, if we happened to sleep late (MY DS and I are both night owls and late sleepers ) we would get to the park around noon or so after breaky (lunch for real people) and then hit the park until I couldn't do it anymore. We of course would rest for dinner. If we were up to it, we would go back out.

We slept in even with a wake up call and missed a morning adr with stitch, so we just made an alternate arrangement. This trip, I warned my DS that I would be walking slower, taking more breaks. He accomodated me by pulling me by the hand up those hills.

And sometimes, when I couldn't walk anymore or was just too tired, we went back to the hotel early. Yes, that even meant getting to MVMCP at 7 pm and limping home at 11 pm. Some days we even stayed at the hotel and didn't leave the room. I had to stay in hotel for two days to rest up. We just swam, watched tv and ate at the food court. So the second trip was much slower but more relaxed but we still had a great time.

Hey even if I was holed up in ahotel room cause I couldn't walk, I was still at Disney I am too scared to use an ECV - I see people not moving for those using them and I think I would experience some road rage and run some people over. And I don't think Mickey would approve of that. It's not very magical to run someone over.

 

[OneLittleSpark]

May I ask, what is CMP? Thank you.

Oops! Sorry, I get so used to using acronyms, that I forget not everyone knows them ! CMP is Chronic Myofacial Pain. It's a neuropathic pain condition, like Fibro, that often occurs along with it (there is still a fair bit of debate over where one finishes and the other begins). Whereas Fibro is generally characterised by widespread, moving pain, which is unpredictable; CMP tends to concentrate in particular areas, and be easier to predict. This is obviously a simplified explanation, but that's the way it makes sense in my head.

I have terrible pain too, in my ankles, up through the arches in my feet, and most especially, my calf muscles will tend to seize if I am walking too much, too far, or too fast. I also wear orthodics and running shoes, which I hate, because I am a flip flop girl at heart. RIP to my flip flops.

Have you tried Crocs? They do all sorts of designs now, and they're wonderfully comfortable and light. If the strap on the back is too loose for you, you can buy an adjustable strap to fit instead. In the summer I pretty much live in my Crocs, and I'm always sorry when the weather turns colder again.

Hey even if I was holed up in ahotel room cause I couldn't walk, I was still at Disney I am too scared to use an ECV - I see people not moving for those using them and I think I would experience some road rage and run some people over. And I don't think Mickey would approve of that. It's not very magical to run someone over.

Please, please, please don't let this worry hold you back. I know it can be so scary to have to make such a big change, but in this case it really is worth it. Disney is wonderful to those of us on wheels, and 99% of the Guests are just as lovely. Some of my most magical Guest interactions have happened since I got my chair, and whenever I've been struggling, somebody seems to magically pop up to offer me help ! Yes, there are a few morons, and there are a lot of people off in their own world, but it is still managable. If you get stuck in a crowd, I normally find that a polite but loud 'excuse me please' or 'sorry, can I get past please' is enough to sort things. And if all else fails, just run them down and wipe the blood off before a passing CM sees it *

Good luck!


*Please see signature

 

[hematite153]

Have you tried Crocs?

Definitely worth trying. They make quite a difference for my DW.

But, I tried to wear Crocs just for a couple of fancy dinners so that I didn't have to wear my running shoes and didn't have to carry something heavy during the day. And, I ended up in agony (knees and ankles) from the lack of support even when I'd only worn them for a couple of hours and mostly while sitting. I can wear them at home for dog walking, etc. But, I still feel the lack of support. And, when I am doing as much walking as at WDW, I just can't go without the constant support.

What I'm saying, is they can be a miracle shoe for some conditions/people, but, test them elsewhere before relying on them at wdw.

 

[OneLittleSpark]

Definitely worth trying. They make quite a difference for my DW.

But, I tried to wear Crocs just for a couple of fancy dinners so that I didn't have to wear my running shoes and didn't have to carry something heavy during the day. And, I ended up in agony (knees and ankles) from the lack of support even when I'd only worn them for a couple of hours and mostly while sitting. I can wear them at home for dog walking, etc. But, I still feel the lack of support. And, when I am doing as much walking as at WDW, I just can't go without the constant support.

What I'm saying, is they can be a miracle shoe for some conditions/people, but, test them elsewhere before relying on them at wdw.

Is it arch support, or ankle support that you're lacking? Because there are some Crocs designed for people with foot and leg trouble, that provide extra arch support. If it's the ankle support that's the issue, they make 'all-terrain' Crocs which might be better for you. That said, it may just be that your feet don't really like any Crocs!

 

[Momelie]

Another fibro-ite here, too! (Is that a word?), although mine is secondary to auto immune arthritis, so take that for what its worth, LOL!

Mornings are usually my better time, so I have many more spoons then. I second the notion of knowing your fibro REALLY well - but I'd take it to another level and say to know your parks really well also. For instance, Epcot is the one with the most distance to cover, therefore you know it will be straight walking with not quite so much people dodging, KWIM? It is easier for me to use my (small, lightweight) ECV there, since there's not so much stopping on a dime and having the little ones come out from nowhere, as in other places. My arthritis is in my hands so I make sure that we stop for lunch (and hand resting/recharging the battery) in certain places where I know there are outlets - and I absolutely know where all the outlets are LOL!

For MK, I know that it is the smallest footprint, will have the most people per square foot and that Fantasyland will be hell on wheels literally for an ECV, therefore I usually let my DH push me in my wheelchair (MK also has the steepest hills, IMO). Its just safer for all concerned. It also seems like - and it might be my imagination - that the shops in MK have smaller aisles, too. But its just easier for me to have him push there.

In all cases, I take my cane for support. Also, it is handy know where the smoothies are in each park - good pick me ups for when the fatigue takes over, as it will in the Florida heat! I live here and it gets to me.

If there is any park that seems easiest and most doable for me, it would have to be MGM. I still usually have either the ECV or wheelchair with me, but I can, if needed probably do this one by myself, if needed, maybe. (Never tried it, though.) My family would probably be right behind me with some wheeled conveyance worrying like old ladies, but I think I'd be just fine. Wide walkways, crowds aren't that crazy except during SWW and Osborne Lights, and fairly flat terrain. There are many places to rest in the shade and enjoy a cold drink when the fatigue hits, and keep going when it passes. (DH and I had our first "real" date here, so I highly recommend a frozen banana in front of Gertie, we think she's good luck.)

It is with great regret that I have had to finally just take AK off my places to go list. The walkways just got impassable for my ECV, and difficult for anybody pushing me in a wheelchair. The vegetation makes the atmosphere, well, I don't know, difficult for me. Anyway, I don't go there anymore. I enjoy hearing about it, though, and miss brushing the animals.

My recommendation would be to look at the disabilities guide and plan around your best time of day, and which parks meet your needs according to your strengths. If you need mellow in the evenings, I recommend the Epcot fireworks, or a hotel beach. Conversely, if you can take a nap midday and come on strong in the evening, do Wishes from inside the park (I go early and sit on a bench in the hub, reading, LOL). Plan according to your own fibro and it will work out much better for you.

OK - that was a novel! I need a nap now, LOL!

PS - I'm loving the new Crocs high heels! I wear them to teach in, and with most of my non-grubby clothes.

 

[hematite153]

Is it arch support, or ankle support that you're lacking? Because there are some Crocs designed for people with foot and leg trouble, that provide extra arch support. If it's the ankle support that's the issue, they make 'all-terrain' Crocs which might be better for you. That said, it may just be that your feet don't really like any Crocs!

Yeah, I've tried on just about every Croc in the store, but, none of them have the support I need.

Essentially, I have regular arches that collapse easily and I pronate badly. (I also have one foot that starts to turn in when I get tired...my DW has learned to watch for that as a sign when we're at WDW because it means I'm likely to start decompensating in other ways soon.) Thus, I need a shoe with good quality pronation support and motion control.

I wear Birkenstocks most of the time and all the time while teaching. But, they are too hard on the bottoms of my feet for the quantity of walking at WDW. So, I wear really good quality, fitted to my feet running shoes with orthotic inserts.

 

[Judy from Boise]

What works for me:

1. Staying at the Swan, boat to two parks, and the comfiest beds ever. Also a fabulous pool complex for those lazy afternoons.

2. Sleep in till I wake up, compensate by going to the park with eve EMH. I have lots more energy in the evenings

3. Ambien

4. Chaco sandles

5. Advil for shin splints

6. Avoid fried food, sodas etc (just like home) and try and eat healthy.

7. Carry nothing that won't fit in my pants pockets of my safari vest

8. My DH massages my neck and upper back for a few minutes in every queue

 

[hematite153]

8. My DH massages my neck and upper back for a few minutes in every queue

Nice! I've gotta remember to show this thread to my DW...maybe I can convince her to do this.

 

[onnawufei]

The first time I went to Disney (October 2008) I was fine aside from being out of shape, but the second time (December 2009) I had fibro. It's amazing what a year will do.

My daily routine began with me taking two tramadol and four ibuprofen with my general medication. (At the time it was Cymbalta.) I'd then take more tramadol and ibuprofen whenever the pain started to get to be more than I could ignore.

I think the only thing I did that was different than the first year I went (other than the painkillers) was that I sat down every opportunity I could. Even if my DH and I were getting a snack, he'd get the snack while I sat down. My knees tend to hurt a fair bit, but I don't have too much issue getting up (especially if someone lends me a hand) so if there was nowhere to sit I'd just find an out of the way spot on the ground. I also chugged water, which I tend not to do at home.

I didn't get any special shoes or anything, but I'd bought some inserts right before the trip and those helped a fair bit. I've seen a few people now suggesting Crocs but I'm... resistant. I've always thought Crocs were ugly, but if they're really that much more comfortable I'm pretty sure I could get over it.

This year I'll be going in October again and as of right now I'm worse off than last year, probably due at least in part to developing hypothyroidism. I'm really hoping it's under control by then, but darnit I'm not going to let my body mess up my trip!

 

[brighteyes]

Oops! Sorry, I get so used to using acronyms, that I forget not everyone knows them ! CMP is Chronic Myofacial Pain. It's a neuropathic pain condition, like Fibro, that often occurs along with it (there is still a fair bit of debate over where one finishes and the other begins). Whereas Fibro is generally characterised by widespread, moving pain, which is unpredictable; CMP tends to concentrate in particular areas, and be easier to predict. This is obviously a simplified explanation, but that's the way it makes sense in my head.



Have you tried Crocs? They do all sorts of designs now, and they're wonderfully comfortable and light. If the strap on the back is too loose for you, you can buy an adjustable strap to fit instead. In the summer I pretty much live in my Crocs, and I'm always sorry when the weather turns colder again.



Please, please, please don't let this worry hold you back. I know it can be so scary to have to make such a big change, but in this case it really is worth it. Disney is wonderful to those of us on wheels, and 99% of the Guests are just as lovely. Some of my most magical Guest interactions have happened since I got my chair, and whenever I've been struggling, somebody seems to magically pop up to offer me help ! Yes, there are a few morons, and there are a lot of people off in their own world, but it is still managable. If you get stuck in a crowd, I normally find that a polite but loud 'excuse me please' or 'sorry, can I get past please' is enough to sort things. And if all else fails, just run them down and wipe the blood off before a passing CM sees it *

Good luck!


*Please see signature

OMG I know what CMP is - cause I have it too. Sorry don't know what I was thinking. lol

I used to wear crocs when I worked at the clinic and stood on my feet all day but there is not enough support for me when walking. I feel like my cmp is my sharp stabbing pains in my muscles or what causes my calfs to seize when I walk too far.

I feel like my achiness is the fibro. Not sure if that is right or not, but that's how I look at it. The cmp is when I can say this is where my pain is - the fibro is when I say I hurt everywhere.

 

[brighteyes]

I echo the fact that knowing your fibro works, but on the other hand my fibro is different every day.

So while I was there, we went to the parks when we got up, did not have too many early adr's for breakfast, and when we were tired we left the park. We had ADR's so we could have some sort of sit down for an hour or so to rest during the day.

When we woke up we just winged it day by day. We planned our park days to coincide with the adr's we had that day and made a few musts for the park, then after that, whatever happened - happened.

As far as sleep disruptions, we did not have a lot. We stayed at POP in Building One, (Lady Building) and stayed on the first floor on the corner by the pool. We were actually behind the laundry rooms. So we did not hear pool noise or have a lot of traffic by our room.


Hope that helps.

 

[Sandy1975]

Hello everyone. I'm new here. We are planning our trip July 5-12 2010. My husband is 36 yrs old and was just diagnosed with Fibro. So it's hard for us to "know" his disease at this point. He is taking savella and just started taking 100 mgs yesterday and it seems to help him a little more. His problems are the pain and fatigue. Sometimes he crashes at noon, other days he's ok until 5-7 pm. We just never know. I tried talking him into using a wheel chair or motorized vehicle, but he REFUSES. He thinks he is too young.

Any advice? thanks

 

[Cheshire Figment]

Hello everyone. I'm new here. We are planning our trip July 5-12 2010. My husband is 36 yrs old and was just diagnosed with Fibro. So it's hard for us to "know" his disease at this point. He is taking savella and just started taking 100 mgs yesterday and it seems to help him a little more. His problems are the pain and fatigue. Sometimes he crashes at noon, other days he's ok until 5-7 pm. We just never know. I tried talking him into using a wheel chair or motorized vehicle, but he REFUSES. He thinks he is too young.

Any advice? thanks

Hi and to disABILITIES!

Please ask him 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!

 

[SueM in MN]

Hello everyone. I'm new here. We are planning our trip July 5-12 2010. My husband is 36 yrs old and was just diagnosed with Fibro. So it's hard for us to "know" his disease at this point. He is taking savella and just started taking 100 mgs yesterday and it seems to help him a little more. His problems are the pain and fatigue. Sometimes he crashes at noon, other days he's ok until 5-7 pm. We just never know. I tried talking him into using a wheel chair or motorized vehicle, but he REFUSES. He thinks he is too young.

Any advice? thanks

My SIL is only 28 and has MS. He is 'too young' to need an ECV either, but unhappily, his body does not always cooperate with what his mind wants.

The problem with waiting to use one is that many people wait until they are in pain or until they are about to drop. If you think of energy like a checking account, that's like continuing to spend money until the bank sends an overdraft notice (thinking of it that way does help some people to think about it in a different way).
Just like a checking account, energy has to be 'managed' and balanced. If you overspend one day, you won't have enough in the budget for the next day. Using an ECV or wheelchair will help him to manage his 'energy account' so he doesn't 'spend' the energy too quickly.