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

[3kidsmommy]

Interesting thread...my dh just got diagnosed with MS on Halloween. Even though he does have to walk with a cane and uses an ECV for longer distances, people still look at him and think he is normal. They don't get the extreme fatigue (and then still not being able to sleep!), the balance issues, the bathroom issues, the depression (a very real part for him)...and the list goes on. What people see are his tattoos, Grateful dead cap, and stickers on his ECV and they automatically think he is someone who is faking. He would trade the way he feels with any one of those people. Anyway...we will be going to WDW in 13 days and are hopeful we will have a good time. We will be getting a GAC both for my dh and my son, who has autism. I suspect that my dh will have to spend a lot of time doing nothing--so I will have our 3 children with me most of the time. I just hope he has at least one good day to enjoy MK. He is so looknig forward to it! Hugs to all!

 

[JenJen]

I hope you have a great time. Make sure your hubby stays cool. Lots of water and if he needs a cool place to relax go to first aid and they will be more and happy to let him rest for a bit.
What caught my eye about this most is that your son is autistic and I have heard so many story's about a a prent with a Auto immune disease that has a child with Autisum. I really think there is a connection. I have fibromylagia and my MS results are inconclusive so I visit a site called fibrohugs and most parents have children that are in the Autistic spectrium. Weather it be ADHD, Bipolar disorder, Asbergers, PDD, or one of the many others in the spectrium. My two kids both are in the spectrium but that does not count because they are not biologically mine bu there mom did have CFIDS for years and it went away. She also has a lotof Chronic pain but has not been diagnosed with anything.

I really hope you have a wo nderful trip. I can't wait until I can have a chance to go back to the world. 5 years is just way too long. I love Disneyland which I go often but there is something unique about WDW that makes you want to come back.
(((((((((((((((((((((((hugs))))))))))))))))))))))))))
Jennifer

 

[3kidsmommy]

Interesting connection...but same as you--Chandler isn't my dh's biological child--he is mine and dh adopted all 3 of my children. I have heard about people having a great deal of difficulty being diagnosed with MS. We were "lucky" in that regard. Darrin's spinal fluid had the markers (whatever it is they look for) and his brain had so many lesions and plaques that they could not count them all. They even showed up on CT first, which I hear is really weird.
I often wonder if there isn't some connection with autism and other disorders--Chandler's bio dad's family has a slew of issues going on--some very rare like Noonan's Syndrome. You just can't convince me there isn't something genetic. Guess I will always wonder....

 

[CJRN]

Hi Puggymom!

Started with the cherry juice the other day (as soon as it arrived). I also decided to order the gel caps.

Having a painful week, which I initially thought was a bad migraine/MPS flare, but after 2 visits to chiropractor, and almost 2hrs of massage therapy, the pain is still there (4 days now). I am now thinking it's a tooth/mouth problem, so going to the dentist in one hour, and hoping to find the answer.

 

[CJRN]

Had a small crack in a back tooth. Always have had perfect dental health. Dentist says it happens as we get older (geez)! Oh well, have to return, and looking at a possible crown/root canal...........no thanks!

 

[Earstou]

What caught my eye about this most is that your son is autistic and I have heard so many story's about a a prent with a Auto immune disease that has a child with Autisum. I really think there is a connection. I have fibromylagia and my MS results are inconclusive so I visit a site called fibrohugs and most parents have children that are in the Autistic spectrium.
Jennifer

There is a possible connection between autism and Chiari Malformation I, also. It seems there is a higher incidence in the Chairi population than there is in the general population. Interesting!

 

[puggymom]

Had a small crack in a back tooth. Always have had perfect dental health. Dentist says it happens as we get older (geez)! Oh well, have to return, and looking at a possible crown/root canal...........no thanks!

OUCH! feel better.

 

[bexareaglecheryl]

I know this is an older thread but I just saw it today. I too have the bladder disease interstitial cystitis. It is so horribly painful. The pain meds help but the side effects kill me while at WDW- specifically the edema in my legs. For the last 2 trips (since my dx) I thought I had hives, but come to find out it was intermittent claudication. I have always gone to WDW where we would leave on a Friday and come back on Saturday - usually 8 nights. I found that I needed to rest more, so on our trip planned for May/June I booked more days so that I could build in more rest days. If there were no GAC I don't know that I could do the amusement parks. The GAC makes WDW for me and I am so thankful for the wonderful training the CM's get with respect to treating those of us with "invisible" diseases. WDW rejuvenates me and gives me strength and reboots my happiness level. I can't live without my Disney.

 

[CJRN]

Chronic Myofascila Pain/Fibromyalgia sufferers.....

What do you do for exercise without hurting? Swimming is not an option for me.

Also when you hurt, how do you relieve it?

Thanks!

 

[LauraAnn630]

Good question! Im so tired of suffering. I hurt so bad latley I cant stand it. My doctors wont help me. I keep going to new doctors. I need someone that can help me. I have two boys 3 and 8.

 

[puggymom]

Chronic Myofascila Pain/Fibromyalgia sufferers.....

What do you do for exercise without hurting? Swimming is not an option for me.

Also when you hurt, how do you relieve it?

Thanks!

Weather permitting I walk the pugs, it's 3/4 mile walk around the neighborhood, with some up and down small hills. (thankfully I have a fenced in yard too) I have a treadmill, but it bores me to tears. When I'm no where near being in a flare, I like the early Billy Blank's Tae Bo tapes, I don't bounce around like him, but it gets you moving.
You have to move, I know it hurts, but the more you don't move the worse it will get. Even if you start by only walking to the end of your driveway, at least it's a start.
Currently I am coming out of a really bad flare, I was out of work from 2/2 - 3/29 and am only working 4 hour days. I should be full time next week. Even at my worst I still did some walking, that's one thing about having dogs, they make you move, they need their excercise too.
As for relieving the pain, I have posted about cherries, I use the cherry flex pills, they are the most convienent. My rhuemy is not a big pill prescriber, os I do load up on Alleve when needed. When I was having trouble sleeping during the flare, I started with Tylenol PM, when I told him that, he finally prescribed muscle relaxants which have helped.

Hey, if you don't mind sending some good vibes. I am seeing my internist (who I last saw in November for my physical). I am having a tough time with head and neck pain, and rhuemy doesn't seem concerned. I figure, if I am coming out of a flare why are these symtpoms getting worse. Thanks

 

[JenJen]

Please visit Fibrohugs My God Father owns the site and there are thousands of regestered users that can help you with pain relief Ideas. Some you can make at home!!!!
The problem with fibromyalgia is that what works for one person will not work for another. Sometimes it takes years of trying differant meds to find the one that works for you.... There is a new Medication that is helping many fibro suffers it is called Cymbalta... Some take Cybalta (A new type of antidepressant that works with your Nuerotransmitters to reduce pain) and Lyrica ( an anti siezure med that helps nerve pain) together and have gone completely off all pain meds because it has helped them so much. For some reason it only helps women suffering from fibro not men.
I hope to see some of you at fibrohugs my regestered name is Katmeow...
((((((((((((((((((hugs))))))))))))))))))))
Jen

 

[CJRN]

Hi Laura,

Sorry to hear about this. I'll get back to you about doctors, there's someone that keeps a running list, from another informative website.

 

[CJRN]

Puggymom,

Sending good vibes your way!

It's awful when one has a flare. I only work 4 hours a day. I'm Registered Nurse, and have not been able to work at a hospital for a few years, because I was always in pain. I now work in a school, basically private duty for one child. I had been out of work for over one week, because even though she's tiny, she jumped on me one day, wrapped her arms around my neck, and legs around my waist, and that put me out of commission!

I have a dog, but she's not the best behaved on a leash, and I end up hurting too much if I walk her. I just got an XL Glider that I started to use, but can only tolerate 5 minutes every few days.

WARNING: DO NOT use a med called Gabitril.....I go to an osteopath, and no matter what we tried, I continued to suffer with chronic pain, so we tried this "new wonder drug", well I was thrilled, I was painfree, HOWEVER I ended up having seizures, and bought me an ambulance ride to the ER. This was over one year ago, and NOW there are strong warnings about this med.

I do have to use meds, but try not to. I have muscle relaxors, pain meds, and also lidoderm patches (dulls the pain at the site). I also see a massage therapists on a regular basis.

 

[CJRN]

Puggymom,

Sending good vibes your way!

It's awful when one has a flare. I only work 4 hours a day. I'm Registered Nurse, and have not been able to work at a hospital for a few years, because I was always in pain. I now work in a school, basically private duty for one child. I had been out of work for over one week, because even though she's tiny, she jumped on me one day, wrapped her arms around my neck, and legs around my waist, and that put me out of commission!

I have a dog, but she's not the best behaved on a leash, and I end up hurting too much if I walk her. I just got an XL Glider that I started to use, but can only tolerate 5 minutes every few days.

WARNING: DO NOT use a med called Gabitril.....I go to an osteopath, and no matter what we tried, I continued to suffer with chronic pain, so we tried this "new wonder drug", well I was thrilled, I was painfree, HOWEVER I ended up having seizures, and bought me an ambulance ride to the ER. This was over one year ago, and NOW there are strong warnings about this med.

I do have to use meds, but try not to use them, unless I need them. I have muscle relaxers, pain meds, and also lidoderm patches (dulls the pain at the site). I also see a massage therapists on a regular basis.

 

[CJRN]

Hi Jen,

I'll have to research those meds. Gabitril that I had a serious side effect from is an anti-seizure med, so I am not able to take anything along those lines.

 

[CJRN]

Here's a website that has ALOT of great info (my opinion)

http://www.sover.net/~devstar/

Oh, Puggymom, there are 6 trigger spots between the upper back and neck area, maybe that's why you are having pain?

I continue to take my cherry juice, every day, and I look forward to be on it for one month. I'm having minor outpatient surgery this Thursday, so hopefully it won't set me into a major flare.

 

[CJRN]

I hope I'm not being a pain posting so much today. I just came upon an interesting website, hope this helps!

http://www.triggerpointbook.com/index.html

 

[JenJen]

Hi Jen,

I'll have to research those meds. Gabitril that I had a serious side effect from is an anti-seizure med, so I am not able to take anything along those lines.

I have not taken any of the meds I mention because I have no health insurance right now and I can afford them I have just heard some great things about them....
I had a bad side effect with nuerontin which is a anti seizure med which put me in the hospital but they switched me to topamax (anti seizure as well) and I was fine....Sometimes it is just finding the right med....A good person to ask about meds is the pharmacist they can tell you if the active ingrediants are simular or differant. I am so sorry you had such a bad experiance.....I had the same thing happen when I took ultram it gave me seizures but other people it works awesome for we are all so differant!
(((((((((((hugs))))))))))))))))
Jen

 

[tiggspring]

Sorry I cant rememeber your Member name and the post wont let me go back to check...gotta love fibro fog!!! I had quite a battle with SSI because when i was diagnosed 12 years ago the CDC didn't think Fibro as real. Even the SSI Dr. said I could not work and I was denied!! After 3 years of fighting I was told it would go before a Judge..in 1-2years!!!We had lost %50 of our income and bills were mounting and I was hysterical. My SSI lawyer was prepared to wait..of course if we won she would get 1/3 of every months payment...she was nice but that sounded crazy to me. I contacted my Congressmans office ( Barney Frank of MA at the time) and there responce was "you should have contacted us earlier " They contacted SSI ajudication and low and behold I was in frount of a judge 2 weeks later!!!(they had told me a month). THe judge was so agrivated with the situatuation he woulnt even let the occpational therapist speak!!I had a check 3 months later. Good Luck. HOPE THIS HELPS ALL OF YOU LOST IN THE SSI TOURTURE CHAMBER!!