Chronic Fatigue Syndrome,Fibromyalgia, and other "invisible" illnesses in WDW

I just stumbled upon this thread. I have been having Diagnosis problems for awhile and Was told on Monday, That 5 years ago I tested posetive for Lupus. They redid my bloodwork and I was suppossed to get the results today but they were not back yet. In any event The dr's are saying it could be lupus, fibromialgia/MS etc..

I am going to Disney in october and I am in short worried..Recently my bad days have been coming alot more frequently. I am concerned about the walking and waiting in lines etc...But I am concerned enough about the pain that I just don't know if I can do it?

I know I have to go on these websites you all cited. I have seen you mention FLARES? Is it possible that these episodes are flares and I might be on a quiter swing by then? How long typically do they last?

Any advice is most appreciated..
 
I have had flares last a day and flares last two months. It is so fustrating because when I feel good I want to do EVERYTHING but when I am sick I can not do a thing. I recommend visiting Fibrohugs for any information or questions you have. They are great!!!!!!
(((((((((((((hugs)))))))))))))))
Jennifer
 
It anyone on a pain patch? My doctor just put me on these because I had gastric-bypass. With WLS I don't absorbe 100% of my meds in my stomach. I was on lortab for my fibro. How does your doctors treat your chronic fatique and fibro?

TC
 
babyblues68 said:
It anyone on a pain patch? My doctor just put me on these because I had gastric-bypass. With WLS I don't absorbe 100% of my meds in my stomach. I was on lortab for my fibro. How does your doctors treat your chronic fatique and fibro?

TC
I was on the Fentynol patch at one time and it was too strong for me I felt "out of it" a lot of the time so I just take Lortab if the pain gets to bad. Other then that I take excedrine for pain.
((((((((((((((((((hugs)))))))))))))
Jennifer
 
JenJen said:
I was on the Fentynol patch at one time and it was too strong for me I felt "out of it" a lot of the time so I just take Lortab if the pain gets to bad. Other then that I take excedrine for pain.
((((((((((((((((((hugs)))))))))))))
Jennifer

Fentynol is working with no side effects. I still have break thru pain. I wish I could try excedrine. Never thought about that med. But excedrine is on my no-no list after WLS. Thanks for the feedback!

TC
 
I haven't seen this one on here, and I know I can't be the only disney addict with Ankylosing Spondylitis. While it is invisible, it actually is visible, I am stooped over due to progressive fusing of the spine. I have been able to ride pretty much anything that I want, but I draw the line at the rough rides. My DW does a good job of pre-riding, and then telling me what to expect, or "You don't want to do that one".
 
This is my first post on this board (yeah!). I have MS and have not been to Disney since my MS was confirmed. I am meeting friends there in November and I am a little nervous about having problems while there. They are all healthy and active. I am as well, most of the time. I worry about fatigue mostly, but also some of the other "hidden" problems. I am young and most of the time, nobody notices when I am having troubles. Biggest concerns: Getting to a bathroom in time and not waiting in line too long (can't always hold it)
Getting overheated (causes paralysis in my case)

Anyone with MS who has been there recently and can share some suggestions would be great!

I have a cane, but don't have to use it often. Also, have never had to use a wheelchair. What type of proof of your illness do you have to supply the Employee renting you the chair. I hope I don't need it, but in case.

Thanks and my support goes out to all of you posting on this thread.


Missi
 


mdfishinggirl said:
Getting to a bathroom in time and not waiting in line too long (can't always hold it)
Getting overheated (causes paralysis in my case)
depending on when you are going in November, it may not be busy at all. If you are going over Thanksgiving week, that is a busy time. Before Thanksgiving, not so busy. Check out the park maps so you know where the closest restroom is. Many are very large and even during busy times, don't have much of a wait. Times when it is busy include right before and right after parades.
I have a cane, but don't have to use it often. Also, have never had to use a wheelchair. What type of proof of your illness do you have to supply the Employee renting you the chair. I hope I don't need it, but in case.
You don't need any proof to rent a wheelchair or ecv. You can find more information in the disABILITIES FAQs thread near the top of this board.
Even if you don't think you will need one all the time, you might want to take along the contact information from that threadd so you can all one of the places if needed.
 
Thank you Sue, I appreciate the help and I will check the top of this thread for the info.

By the way, I am from MN originally! Go Vikings.

Missi
 
Hi Cellthing: I know what ankylosing spondyitis is as my father had it. Because of it he had alot of difficulties in his life with things many take for granted.

Yes he was stooped as well, if he caught a cold in his chest he had to def see a doctor because of being stooped and the lung capacity. He had trouble dressing, putting on socks, etc. but tried to be independent as well and never complained. I have to give him credit, as he ached very often in the back and hip area.

He passed away 10 years ago, but he did drive to florida witih my brother for business, and they took one day and did magickingdom which I am happy about. I couldn't believe that he actually tried space mountain (he was in his 60's then), which I will not try.

Just wanted to know that you are not alone and others understand your hardship.

Take care,

Deb.
 
Hi everyone :Pinkbounc

i havent come on the board in ages and thought i would come on to try and find out some things that i need to about queuing and stuff with disabilities and found this post!! its really interesting to find out about other peoples experiences at disney with 'invisible illnesses' because i really have no idea what to expect and how its going to be. ive had ME/CFS for 14 years since i was 7 years old and also have pernicious anemia (autoimmune blood disorder which causes paralysis and tiredness), so both are invisible illnesses. we are going to disney for christmas this year for a week and im excited but really quite nervous about how on earth im going to cope and what its going to be like. i have my own wheelchair which i will be taking with me on the holiday and would have to use it all the time at disney, i cannot walk that far at all.

is the ECV an electric wheelchair? people have mentioned it and im guessing it is like an electric wheelchair/scooter. can you rent these from disney then?

i have no idea how it works with the whole being in a wheelchair and getting on the rides thing, what is the GAC card? could someone explain it to me please? does this mean you can be taken through a different entrance and go to the front of the queue?

i dont automatically think that because im in a wheelchair that i should skip the queue or that im entitled to or anything, someone was discussing this and that we shouldnt necessarily get 'special' treatment. but the problem with me is that even with using the wheelchair i just dont have the energy to be able to wait in a queue. i will probably have a limited amount of time during the day when i can be out in the park and then will have to go back to the hotel to rest so that i can make it through and i guess i dont want to spend the time in a queue if there was any way when i would be able to skip it as by sitting in the wheelchair i get a lot of pain. ok maybe im contradicting myself there oops! but how does it work in the parks if you just cannot wait in line?

i think i read something about you getting a time to go back to the ride and then going on it but do u have to go to the actual ride to get your 'time of ride' like a ticket and then go back later or can you pick up a time somewhere else? im saying this coz if we went all the way to the ride say at 10 in the morning and it said some back at 3 in the afternoon i probably just wouldnt be able to do it so i could possibly end up with a bunch of times to go on when i may not be able to last out till then. all i can be sure about is how i am right then and there and if im well enough to go on then.

i just want to find out as much as i can about how to do this so my family (my parents and sister) can still enjoy it and by me being ill it doesnt make it soo much harder that they cant enjoy it too.

if anyone can give me any advice or pointers in the right direction that would be great thanks! Karfy xxxxxxxxx :flower:
 
Karfy said:
is the ECV an electric wheelchair? people have mentioned it and im guessing it is like an electric wheelchair/scooter. can you rent these from disney then?
An ECV is a scooter. They can be rented from Disney at the parks or from one of the off-site medical equipment companies.
They are like a power wheelchair because they have power and don't need to be pushed. They can have 3 or 4 wheels and are steered by a "yoke" similar to how a bike is steered. The power and the steering are controlled by different mechanisms. They are pretty easy to drive with a small amount of practice. Most people who use ECVs can walk at least a bit.

Power wheelchairs are different than ECVs in the way they are controlled. They are not for rent at the parks and are only rented by the off-site medical companies. They take quite a bit of practice to get the hang of, so most places will only rent them to experienced users. Power wheelchairs use a joystick that controls the speed and direction at the same time. The joystick actually controls a computer in the wheelchair which controls the speed and direction by sending more or less power to one wheel of the wheelchair.
i have no idea how it works with the whole being in a wheelchair and getting on the rides thing, what is the GAC card? could someone explain it to me please? does this mean you can be taken through a different entrance and go to the front of the queue?
If you go to the disABILITIES FAQs thread stuck near the top of this board, you will find a lot of information about renting ecvs/wheelchairs.
There is also a link to a past post about boarding rides that might be helpful and the last post in that thread explains all about GAC (Guest Assistance Cards).
In general, you don't need a GAC to use a wheelchair/ECV in line. The GAC is more for people who have needs other than just an accessible line.
Most lines are wheelchair accessible and have what is called "Mainstream Access" which means wheelchair/ECV users wait in line with everyone else. Some of the older rides (especially at MK and Epcot) don't have accessible lines/entrances.
For those attractions, there is a wheelchair entrance, which you will be routed to just by having a wheelchair or ECV. Depending on how busy it is, how much staffing there is and how many other people with special needs are waiting, you may have a short or long wait. For example, Spaceship Earth at Epcot has a regular line that is not wheelchair accessible at all; the wheelchair entrance is near the exit. We have been there when we had a 5 or 10 minute wait. We have also been there when we had about a 45 min wait because there were many special needs parties ahead of us.
The only people who get "front of the line access" are children on Make a Wish trips and people who have equipment (an example would be a ventilator) that has limited battery power before it needs to be plugged in again.
ibut how does it work in the parks if you just cannot wait in line?
i think i read something about you getting a time to go back to the ride and then going on it but do u have to go to the actual ride to get your 'time of ride' like a ticket and then go back later or can you pick up a time somewhere else? im saying this coz if we went all the way to the ride say at 10 in the morning and it said some back at 3 in the afternoon i probably just wouldnt be able to do it so i could possibly end up with a bunch of times to go on when i may not be able to last out till then. all i can be sure about is how i am right then and there and if im well enough to go on then.
You can go to Guest Services and explain your needs to the CMs there regarding need for a GAC. They don't want to actual diagnosis, what they need to know are what your needs are.
The GAC is not meant to avoid/shorten the wait in line though. It is meant to provide the accomidation you need; in your case, it might be something like being able to wait outside the line so that you can change position as you need to.
Fastpass might be useful to you. With that, you (or someone in your party) goes to the attraction and puts the park passes for all of the people in your party into the Fastpass machine. One person in your party can be the "runner" to go to the Fastpass machine; it doesn't have to be the "owner" of the pass.
What comes out is a Fastpass with a return time on it. You can't come back until at least that time has passed - which may be an hour or may be much later that day. The return time is indicated by a sign above the Fastpass machine area, so you will know before getting the Fastpass what the return time will be.

For times when the CMs write down a return time on a slip of paper (sort of a written fastpass), you (the person with the GAC) need to actually go to the ride and show your GAC to the CM there. He/She will ask how many are in your party and make out a slip for a return time for that number of people. They usually make the return time equal to the time of the standby line. So, if the regular (standby) line says it has a wait of 50 minutes, they will usually write a time for you to come back in 50 minutes. If you feel you can't come back at that time, you can come back later that day. The idea is that you can wait somewhere more comfortable than the line; so you skip the line, not just skip the wait.

Some other hints are to get to the park as early as possible in the day. Even at busy times, like Spring break or Easter, you can get on attractions with very minimal waits. We have gone the last few years to WDW during Spring break. My DD (who is the one with a disability) is not able to get going early in the morning. My DH and other members of our party have gone at park opening time. At MK, they have been able to go on all the Fantasyland rides (some more than once), Splash Mountain, Big Thunder Railroad and the Pirates before 11am without more than a few minutes wait at most rides.
Also, if you go during non-peak times of the year, you will find the waits are very short because there are less people.
Keep in mind too that many rides with long waits early in the day may be busy because people rush there when they first get to the park. Many of those same attractions will have a minimal wait later in the day. A good example of this is Spaceship Earth - people see it as they walk in to Epcot and get in line. In the late morning, the wait there might be an hour. Further into the park, you might find things with very short waits. If you come back in the afternoon, the standby wait for Spaceship Earth may only be 5 minutes. Sometimes, at the same time as the Standby wait is 5 minutes, the wait for people in wheelchairs might be very long because some (like my DD) were not able to get to the park early in the morning.
 
I am so greatful to have found this thread! I know exactly what everyone is
talking about!

I was diagnosed with sarcoidosis right after I got back from Disney last year.
I knew before we left the doctors found swollen lymph nodes and nodules in my lungs. I was going to have to have a cat scan and a biopsy when I returned from Disney.

One month later I was diagnosed with fibro. I call it the F word...lol
Its just TERRIBLE!

One month later...rhumitiod arthritis!

I am really sick. I dont care what other people think! They should be happy they are healthy. I see healthy people and get jealous. You dont know how good it is till your sick.

Our whole lifes have changed this year. I was working a lot before all this.
Now I spend most of my time resting. My husband is doing so much for me and our boys.


I got my whole family going to Disney this next Christmas! I was wondering if there was anything I could do to make my trip to Disney easier on me and
my family. I dont want to slow them down!! Its there first time going!!


I know they are going because I want them to. I also know they will have the time of there lives!
 
When your visit is over, save that GAC! Next time you go the park, take that with you to ask for a new one. Already having one makes getting the new one easier.

We were at Disneyland and initially had difficulities with cast members who did not understand the GAC. It's rare, however happens. We were denied entrance in the handicapped entrance because we didn't have the wheelchair stamp on our GAC. We immediatly requested a supervisor. We had to wait about a half hour but once one finally showed up, the issue was cleared up.

If ever given a hard time by a CM, talk to a supervisor, don't back down.

Check out the passporter special needs book also - it has lots of information to assist with your visit and recomendations for what you need to get the accurate GAC issued to you.

The GAC is really a magic pass for someone that otherwise would never be able to enjoy the parks due to hidden or visible disabilities.
 
Hi,

I know this is an older post, but just came across it today. I ordered the cherry juice, so am excited to get it! I have MPS (Myofascial Pain Syndrome), but had previously been diagnosed with Fibromylagia, who knows, all I know is that I HURT! I've had it for about 14 yrs, and there is still so much the medical community doesn't understand.....how do I know this, I've been a Registered Nurse for 19 yrs, LOL!

Take care,
Christine
 
CJRN said:
Hi,

I know this is an older post, but just came across it today. I ordered the cherry juice, so am excited to get it! I have MPS (Myofascial Pain Syndrome), but had previously been diagnosed with Fibromylagia, who knows, all I know is that I HURT! I've had it for about 14 yrs, and there is still so much the medical community doesn't understand.....how do I know this, I've been a Registered Nurse for 19 yrs, LOL!

Take care,
Christine


GIve the cherry juice a good month or so, it needs to get into your system, but once it does it will make a difference. I have Fibro and now they suspenct myofascial too. My mom has arthritis in her hands and she uses the cherry too. We both switched to the cherry flex pills, more convenient and easier to take.
 
What is this cherry juice you are referring to? My mom suffers from pretty painful arthritis in one knee and refuses to go to the doctor anymore! Could this cherry juice help her??

Thanks in advance for your help!

el :thumbsup2
 
Emmaline Lola said:
What is this cherry juice you are referring to? My mom suffers from pretty painful arthritis in one knee and refuses to go to the doctor anymore! Could this cherry juice help her??

Thanks in advance for your help!

el :thumbsup2

You can get the juice or the gel caps http://www.brownwoodacres.com/cat01.htm

Mom and I prefer the gelcaps.
 
Thanks! I figured I would try the juice, and perhaps the gelcaps for travel. (Ordered earlier today, and received an email it has been shipped, yeah!) I'll repost in about a month. Can't get it fast enough, had a massage yesterday, which I'm sure you know hurts, but I find neccesay to get most of the knots out (have had constant pain/headaches for couple of weeks, so today I am one hurting unit, taking it easy, and taking my meds, UGH).
 

GET A DISNEY VACATION QUOTE

Dreams Unlimited Travel is committed to providing you with the very best vacation planning experience possible. Our Vacation Planners are experts and will share their honest advice to help you have a magical vacation.

Let us help you with your next Disney Vacation!











facebook twitter
Top