Fibromyalgia Thread

[chelynnah]

My day finally came...I have been diagnosed with Fibromyalgia. While I'm happy to finally have a name for the suffering that I am experiencing, I wonder how long it will take to regain control of my body and mind. We are starting with gabapentin to see how that works then we'll move on from there if necessary. In the meantime, we have a trip to WDW which was planned months ago. I'm determined to go and have a good time. We are renting an ECV from an offsite rental place. I'm hoping that helps. Any other pointer that I need to know before our adventure? We own DVC and this will be our 15th trip. My kids have flat feet and one has severs disease. The little one needs a guest assistance card (whatever they are called now) as he can't stand for any length of time. I should be okay with just the ECV for me? I can use it in lines? This is all new and right now the pain is not in any way under control.

I'm so sorry you're dealing with this, but as you said alt here is some comfort in having a name to pin on it, and at least you know it's not in your head like some would have you believe

I have chronic pain issues and ME/CFS which is in the same family of diseases but manifests differently. I use a scooter at Disney now. Most of the lines are wide enough now to accommodate, but if they're not they'll do similar to DAS and give you a return time to go in the exit.

The new DAS system may or may not be able to be used with your little one depending if you have another adult handy. If his issue is just about standing they may advise you to get him a wheelchair as they can be accommodated. However if is is able to walk and move and is generally mobile and it's just about the standing you may get one. Reading through the boards it seems each case is decided on its own merit.

Enjoy your holiday

Hi, I have recently been diagnosed with Fibromyalgia. In hindsight I've been likely suffering from it for years but symptoms got worse over the last 2 years. I have severe degenerative disc disease to my lower back as well as my cervical spine and I always attributed any pains to that.
The past 4 months have been tough. I had to stop work in January. I am a nurse and my back pain, neck pain and hip pain started interfering with my ability to do my job. I also got headaches frequently and aching to my lower legs and ankles. I also started having severe morning stiffness, as well as stiffness when I had sat for too long. Again, I attributed it all to my arthritis in my spine.
I had started going to massage, but I found my muscles so painful after massage. I didn't understand how everyone always felt so good after going for a massage and I was in pain following. It took an amazing physiotherapist and a chronic pain specialist to help me realize and accept the fibromyalgia diagnosis. I'm still struggling to deal with it.
I have been started on Lyrica which I take twice a day. It has helped with some of the burning pain sensations, but I still get terrible leg aching in the night as well as horrible stiffness in the morning. When I try to increase my activity I pay for it with pain and stiffness.
I have also been getting trigger point injections and will start prolotherapy in a couple weeks. I am not sure how I feel about having that. Have any of you had that done?
I have a trip to wdw planned in July. 2 weeks with my 21 year old twin boys. I'm so scared I won't manage. It was on our trip 2 years ago that I first started having the leg pains at night.

Again so sorry about the diagnosis. I cannot stress strongly enough to rent a scooter. Rent from offsite then no matter where you are staying you have the ability to get around and not rely on whether Disney has enough.

My second last trip tried to get through at least the first part, and then was trashed after the first day. I sucked up my pride and rented either ecv or wheelchair at Disney for the rest of the trip and I can't tell you the difference.

My last trip we were offsite and I wasn't sure an ecv would fit in the rental car so I rented a wheelchair from a recommended offsite company and aside from DH's lack of steering skills it was a great trip. We rented a Disney scooter a couple of days. It was our best trip ever. I got tired. But my pain levels remained pretty much average.

Next time I'm renting a scooter for the duration. I'm totally onsite for the next visit, and offsite the following, but there are now scooters that will fold up into the boot and come apart easily.

I have completely swallowed my pride on this issue at Disney etc. I can be stubborn and in pain and make the trip awful for me and DH, or I can scoot round with independence, relatively low pain, and have a great time. No contest.

Again, go have a great trip and make the most of the time with your boys.

Wendy

 

[Marlyn]

Again so sorry about the diagnosis. I cannot stress strongly enough to rent a scooter. Rent from offsite then no matter where you are staying you have the ability to get around and not rely on whether Disney has enough.

My second last trip tried to get through at least the first part, and then was trashed after the first day. I sucked up my pride and rented either ecv or wheelchair at Disney for the rest of the trip and I can't tell you the difference.

My last trip we were offsite and I wasn't sure an ecv would fit in the rental car so I rented a wheelchair from a recommended offsite company and aside from DH's lack of steering skills it was a great trip. We rented a Disney scooter a couple of days. It was our best trip ever. I got tired. But my pain levels remained pretty much average.

Next time I'm renting a scooter for the duration. I'm totally onsite for the next visit, and offsite the following, but there are now scooters that will fold up into the boot and come apart easily.

I have completely swallowed my pride on this issue at Disney etc. I can be stubborn and in pain and make the trip awful for me and DH, or I can scoot round with independence, relatively low pain, and have a great time. No contest.

Again, go have a great trip and make the most of the time with your boys.

Wendy

Thank you. I will really need to swallow my pride if I need to rent a chair. I keep holding onto the hope that I'll be able to cope by then, however my logical side realizes that I likely won't be able to. I don't want to drag my boys down by not keeping up, so I know a wheelchair may be required. If my hip bothers me a lot, I may even need to use a cane. I was in Mexico in April and my ankles and swelled quite a bit. That has never happened before. My Dr figures it was the Lyrica combined with the heat.

 

[chelynnah]

Seriously, pride be darned. The amount of walking you are doing in a day in Disney is miles further than even most healthy people walk in a week. The thing is, if you walk till you're too sore then you may be too sore the rest of the holiday. If you start with a scooter then you can be relatively healthy (within your personal normal) for the whole trip. From personal experience I recommend a scooter over a wheelchair as it gives you more independence, you don't feel a burden on those pushing you, and don't feel trapped if left on your own for a bit, and it's easier on your body, wheelchairs over some of those surfaces can be really jarring. On the other hand if you do go with a wheelchair and are left to your own devices for a bit, remember you can always get out and push it, using it as kind of a walker. I didn't think of that till I got back. Outside the box thinking is needed in these situations sometimes lol.

Renting from an off-site provider is much cheaper (and allows you more flexibility) than renting from Disney. I've personally used bpmobilty for my wheelchair rental and that went super smoothly. I have heard great things about Buena Vista and Walker Mobility as well and would personally consider any of them for my next trip.

I know it's not easy to take that first step, but realising it's just for those occasions outside the ordinary, and that you can then enjoy them the way you should... I really hope that you go for it. Of course I hope that you're feeling better by then and won't need it, but don't be embarrassed if you do.

 

[Marlyn]

Seriously, pride be darned. The amount of walking you are doing in a day in Disney is miles further than even most healthy people walk in a week. The thing is, if you walk till you're too sore then you may be too sore the rest of the holiday. If you start with a scooter then you can be relatively healthy (within your personal normal) for the whole trip. From personal experience I recommend a scooter over a wheelchair as it gives you more independence, you don't feel a burden on those pushing you, and don't feel trapped if left on your own for a bit, and it's easier on your body, wheelchairs over some of those surfaces can be really jarring. On the other hand if you do go with a wheelchair and are left to your own devices for a bit, remember you can always get out and push it, using it as kind of a walker. I didn't think of that till I got back. Outside the box thinking is needed in these situations sometimes lol.

Renting from an off-site provider is much cheaper (and allows you more flexibility) than renting from Disney. I've personally used bpmobilty for my wheelchair rental and that went super smoothly. I have heard great things about Buena Vista and Walker Mobility as well and would personally consider any of them for my next trip.

I know it's not easy to take that first step, but realising it's just for those occasions outside the ordinary, and that you can then enjoy them the way you should... I really hope that you go for it. Of course I hope that you're feeling better by then and won't need it, but don't be embarrassed if you do.

Thank you so much for this reply. I hear what you're saying and I do agree with you. It's just so new and hard to know how to deal with it all. I will look into options for rental. I have booked a rental car and need something that would fit. I can also try to get a scooter at the parks. I will wait to see how I am feeling come July.
I appreciate your advice very much. It's so helpful to speak with people who understand what I am going through.

 

[chelynnah]

Thank you so much for this reply. I hear what you're saying and I do agree with you. It's just so new and hard to know how to deal with it all. I will look into options for rental. I have booked a rental car and need something that would fit. I can also try to get a scooter at the parks. I will wait to see how I am feeling come July.
I appreciate your advice very much. It's so helpful to speak with people who understand what I am going through.

Sorry if I came off too strong. I just know through my own stubbornness how much I prolonged and added to my pain. I hate the thought of anyone else having to go through that.

Walker has one that breaks down for cars and is heavy duty so will really go all day. There is even a video on the site of how easy it is. They run about $30-35 a day (if I remember right) from most of the vendors. I'm sure the other two I mentioned have the portable ones as well. Give them a ring and discuss your needs. I watched the video and it put my mind at ease that even I could break it down alone if needed (though DH will be there). It really is that simple.

All the best. I really do hope for improvement for you before your trip, and again, sorry if I pushed too hard. It comes from a good place, I promise

 

[Marlyn]

Sorry if I came off too strong. I just know through my own stubbornness how much I prolonged and added to my pain. I hate the thought of anyone else having to go through that.

Walker has one that breaks down for cars and is heavy duty so will really go all day. There is even a video on the site of how easy it is. They run about $30-35 a day (if I remember right) from most of the vendors. I'm sure the other two I mentioned have the portable ones as well. Give them a ring and discuss your needs. I watched the video and it put my mind at ease that even I could break it down alone if needed (though DH will be there). It really is that simple.

All the best. I really do hope for improvement for you before your trip, and again, sorry if I pushed too hard. It comes from a good place, I promise

You didn't come off too strong...you came off honest and I appreciate it. Thank you. I will go check out the web site for the walkers.

 

[chelynnah]

You didn't come off too strong...you came off honest and I appreciate it. Thank you. I will go check out the web site for the walkers.

. I'm glad you took it in the spirit it was intended.

Sorry, Walkers is Walker Mobility, they are one of the scooter/wheelchair rental places. They aren't one of the official Disney recommended ones, but they have great write ups from people who've used them. They only drawback of not being the Disney recommended ones is they can't leave the equipment with Bell Services.

I have used BP Mobility and others highly recommend Buena Vista Scooters. Both of those are Disney approved and means if you're staying on site they can leave the equipment waiting for you at your hotel and pick it up after you leave.

If you're staying off-site, I don't think you can really go wrong with any of the above.

 

[SpiritedHaunts]

Slipping backwards...though mom wants me off pills. I have been falling at more not like in the beginning, only worse.

Anybody have a device that can call out to another room for help?


Also, has anyone tried quell?

 

[chewysmom]

Just bumping this thread back up.

How's everyone doing?

My fibro is getting worse. I've been having more frequent flares just feel bad in general. Good days and bad days.

 

[disneyseniors]

Just bumping this thread back up.

How's everyone doing?

My fibro is getting worse. I've been having more frequent flares just feel bad in general. Good days and bad days.

Sorry to hear that, chewysmom! Hope you are feeling better now. I've had a few bad days, but so far this month it's been "normal", or as normal as it gets for us. Is the weather changing where you live? When it's cold or rainy, I can count on more pain and flares. Luckily, it is sunny and warm today! Yea!
Hope you feel better soon

 

[chewysmom]

The weather has been up and down, so maybe that's part of it.

This latest flare is a direct result of me being under a ton of stress for most of last Friday. (Extremely sick cat, and we were trying to figure out whether to cancel our beach trip, do we admit the cat to the hospital, etc.) I just cannot handle any stress any more, which is not realistic, I know.

 

[rosanab1031]

The weather has been up and down, so maybe that's part of it.

This latest flare is a direct result of me being under a ton of stress for most of last Friday. (Extremely sick cat, and we were trying to figure out whether to cancel our beach trip, do we admit the cat to the hospital, etc.) I just cannot handle any stress any more, which is not realistic, I know.

Stress is a killer! I finally got my insurance back through Kaiser and I am now going to multiple behavioral health professionals for my anxiety and hopefully to learn some good comping skills for my stress. I would highly recommend a therapist if it is feasible for you. Good luck with everything. I really hope things get let stressful for you.

 

[rosanab1031]

Just bumping this thread back up.

How's everyone doing?

My fibro is getting worse. I've been having more frequent flares just feel bad in general. Good days and bad days.

I feel like so many of my fibro friends have been having AWFUL flares lately. It's not fun. And last night I had a shift where I was standing most of the time and I wanted to cry at the end of my shift. Took a muscle relaxer and slept like 10 hours. It was great but I'm feeling pretty groggy now. Lol.

 

[ShelliRenee]

Greetings!

I have just been recently diagnosed and have an upcoming trip in November. I am trying to get control of the flare ups with therapy and yoga before I go. I know heat helps me so I am hoping to spend some time in the hot tubs every day. I also have decided to do a park and then have a day of rest, then do another park the next day. Any other advice to help ward off a flare up on vacation?

 

[disneyseniors]

Greetings!

I have just been recently diagnosed and have an upcoming trip in November. I am trying to get control of the flare ups with therapy and yoga before I go. I know heat helps me so I am hoping to spend some time in the hot tubs every day. I also have decided to do a park and then have a day of rest, then do another park the next day. Any other advice to help ward off a flare up on vacation?

Hi Shelli: Sorry to hear of your recent diagnosis. I have had fibro for 20 years. My husband and I go to WDW once a year. I go in knowing I will have a flare and increased pain while I am there. There is no way to avoid it for me. We go to the parks in the am, which is a better time of day for me, and go back to the resort for a much needed rest. In the evening, we go somewhere else, but at a much slower pace. I take pain pills 3x a day, and I increase them to 4 or 5 per day, per doctor's orders. I supplement them with IBP or Naprasone when needed.
I have nomagic answer but with rest, going slower pace, and frequent rest periods while in the parks, it helps. Also the increase in pain medication helps too. I know I wil be miserable when I get home, but take time to get rest, massages, yoga, etc and back to "normal". There is no way to get around the flare ups for me at WDW with the 10 mile plus days. I do use an ECV at Epcot because it is so big and I know I can't make it around that park,
Have a great trip and pace yourself

 

[my3princes]

Greetings!

I have just been recently diagnosed and have an upcoming trip in November. I am trying to get control of the flare ups with therapy and yoga before I go. I know heat helps me so I am hoping to spend some time in the hot tubs every day. I also have decided to do a park and then have a day of rest, then do another park the next day. Any other advice to help ward off a flare up on vacation?

I have had fibromyalgia for most of my life though I was only diagnosed a few years ago. We actually moved from VT to Orlando last year hoping the warmer weather would help, but nope it doesn't. I have now purchased an ECV which I use at all the parks, but when we came before I rented an ECV for the entire stay from an offsite provider. I also take Ibuprofen and Tylenol in addition to my regular meds with extra Tramadol when needed. I learned a couple of years ago that each park has a first aid station that is equipped like a hospital complete with hospital beds. You can sign in and take a one hour nap whenever you need it. I still use that service some days. I also nap in the quiet, dark rides whether I plan to or not. Your vacations will definitely be different, slower, but they can be fun if you stay on top of your meds and sleep. If you know that you'll be out late one night, sleep in the next morning. Soaking in a bath helps me so I always make time. Using an ECV before I need it lets me go so much longer. Good look and God bless.

 

[Marlyn]

Just popping in to say hi. I have rented a scooter for my last 3 trips, and I am so glad I did. It makes it so I can actually have a good time and not suffer. I just returned from our last trip a few days ago. It was very hot there, and while I sweat a lot with the heat...I much prefer it to the cold. It’s starting to cool down here and I really feel it, especially in my legs.

 

[disneyseniors]

Just popping in to say hi. I have rented a scooter for my last 3 trips, and I am so glad I did. It makes it so I can actually have a good time and not suffer. I just returned from our last trip a few days ago. It was very hot there, and while I sweat a lot with the heat...I much prefer it to the cold. It’s starting to cool down here and I really feel it, especially in my legs.

Hi Marlyn: I have severe form of fibro myself, and struggle with the question to use an ECV or not! We go to WDW once a year. I usually start a "training" program 3 months before, consisting of going to the gym for treadmill use 3 x a week. I also take walks when the weather permits.
But I just can't get myself to commit to a scooter. I know I will be more comfortable, but I usually just walk with frequent rests. I also take prescribed pain pills. I always use an ECV in Epcot because there is no way I can walk around WS without one, but that's all.
So glad you had a great time with the scooter. It sounds like you had a good trip, even with the heat

 

[mamabunny]

Hi Marlyn: I have severe form of fibro myself, and struggle with the question to use an ECV or not! We go to WDW once a year. I usually start a "training" program 3 months before, consisting of going to the gym for treadmill use 3 x a week. I also take walks when the weather permits.
But I just can't get myself to commit to a scooter. I know I will be more comfortable, but I usually just walk with frequent rests. I also take prescribed pain pills. I always use an ECV in Epcot because there is no way I can walk around WS without one, but that's all.
So glad you had a great time with the scooter. It sounds like you had a good trip, even with the heat

I know it's tough to consider using an ECV "full time" at WDW, but simply consider this one idea: The ECV is just a tool, to get a job done while you are at Disney World. Nothing more. It doesn't mean you have "quit" trying, it doesn't mean you are going to go home and use one every day, and it certainly doesn't mean your training program is all for naught.

What it does mean is that you are using a tool - just as you do when you visit EPCOT - to accomplish the goal of having a great vacation, without adding more pain, more exhaustion, and more overall discomfort, and possibly causing a flare that continues long after your vacation is over.

Every day I use tools to do things - my glasses are a tool to see better, my calculator helps me do math. I don't just use those tools part of the time - I use them all of the time that I need them.

You don't have to ride it *all* the time - many folks here in the DISabilities forum use a "park and walk" strategy where they park the ECV in a central location and walk, and then move it to another location. They have it for times when there is a lot more walking, when they are waiting for a bus, or when that mid-afternoon slump hits, and they need just a bit of extra help.

I encourage you to rent an ECV at Disney World whenever you need one - or whenever you think it will help you prevent a flare. The best vacation is one that ends with you rested and as pain-free as possible!

 

[disneyseniors]

I know it's tough to consider using an ECV "full time" at WDW, but simply consider this one idea: The ECV is just a tool, to get a job done while you are at Disney World. Nothing more. It doesn't mean you have "quit" trying, it doesn't mean you are going to go home and use one every day, and it certainly doesn't mean your training program is all for naught.

What it does mean is that you are using a tool - just as you do when you visit EPCOT - to accomplish the goal of having a great vacation, without adding more pain, more exhaustion, and more overall discomfort, and possibly causing a flare that continues long after your vacation is over.

Every day I use tools to do things - my glasses are a tool to see better, my calculator helps me do math. I don't just use those tools part of the time - I use them all of the time that I need them.

You don't have to ride it *all* the time - many folks here in the DISabilities forum use a "park and walk" strategy where they park the ECV in a central location and walk, and then move it to another location. They have it for times when there is a lot more walking, when they are waiting for a bus, or when that mid-afternoon slump hits, and they need just a bit of extra help.

I encourage you to rent an ECV at Disney World whenever you need one - or whenever you think it will help you prevent a flare. The best vacation is one that ends with you rested and as pain-free as possible!

You are right, of course. It's not just me. My husband won't use one full time and I feel guilty using one. I know, a lame excuse. Maybe this will be the year we both get one full time? I know it's just a tool, good way to think of it. But there is a stigma attached to using one, IMO, which is something we will have to get over one of these days.

I'm curious: what routine, helps, medication do you use to help with your fibromyalgia or other problems? My fibro is getting worse, along with arthritis, and nothing that used to work does anymore. Pain all the time. Just wondering what someone else who knows what I'm talking about does to help them.
thanks, ruth