hi. first let me tell you a little about my history http://www.healthboards.com/ubb/smile.gif i am 24 years old. i have a neurological disease called Generalized Dystonia. i've been confined to a wheelchair since age 15. i'm also getting diagnosed with an endocrine disease, but do not have a name for it yet, i have bad hormonal problems.

anyway, i've always had severe pain, probably caused by the severe dystonia. then neurology told me to go to a regular doctor to help figure it out. i have severe pain in my joints...especially my hips. my legs are rotated severely from the dystonia, so i'm sure it is hurting my hips. i also have pain in my wrists, shoulders, neck, ankles, etc. but only the joints.

next, i have horrible fatigue. i need to sleep at least 12 hours. i've caught myself dozing off while driving. physically i feel drugged. i don't even do any excersise, seeing as i'm in a chair, and i'm still exhausted.

then, i have problems with the weather. i can't stand the heat. its winter and i still have fans going because i'm always hot. cold however, makes the pain worse. when there's a cold snap i'm in so much pain at times i could die.

so, those were the main issues me and my doctor talked about. he suggested this thing called fibromyalgia. he is doing a rheumatoid test those to rule out other diseases. i got refered back to my original doctor though, so i won't get back into the hospital for another couple weeks. he didn't really do the pressure test thing (i didn't know about this until i went home and looked it up), because i couldn't get out of my wheelchair onto the table so he really couldn't examine me. he just moved and felt my legs, but found out i have bad tremor/muscle spasms.

so, i'd love to know if FMS is possible here? can a neurological disease like dystonia (its similar to parkinson's disease) cause or trigger something like fibromyalgia?

they are doing a test for rheumatoid arthritis, but i don't have any swelling joints and it doesn't run in my family. they will probably do X-rays to look for arthritis (osteoarthritis) caused by the dystonia, but i can't get into the positions they'd want me in, so i don't know how it will work.

thanks for any input!

Angie

Wish I were a doc, so I could answer for certain all of your questions. However, my take is that you gave a marvelous description of Fibro. Usually people that can help are Rheumatologists, Physical Med docs,etc. who believe that Fibro is real(not a mental thing) and have actual experience treating it. There are excellent meds that can alleviate your pain and you have the right to whatever is the most helpful. We'll be pulling for you! Al

Angie, That is so hard to deal with as is. If you believe that you have fms or cfs. I found a great doctor from the list about fms cfs doctors told good site. Posted below. I found seeing someone who is a specialist and is certified in that field has the most knowledge. Hope this helps.

------------------
Dale

Welcome Angie! I'm going to tell you what I tell everyone else....make a list. Make a list of all of your medical problems,aches and pains, from head to toe, even if they are weird things like ear pain or gyn problems and seem unrelated to each other. Give the list to your doctor. I see a rheumatologist and the description you gave definitely does sound like Fibromyalgia. A diagnosis is usually made after ruling out other conditions such as Thyroid,Lyme,Arthritis,Lupus,etc. When everything is negative then it's most likely to be FM. If it is, your doctor should help you with 2 area's---sleep and exercise. You will probably do best with guided exercise through physical therapy. Many of us find that the more inactive we are, the more stiff and sore we get. Light stretching and light exercise has been helpful for me. Good luck to you! Let us know how you make out with the doctor.

hi guys http://www.healthboards.com/ubb/smile.gif hey, i really appreciate the responses i've gotten thus far. i have never really heard of this disease, i think i saw it once on tv awhile ago. i guess i'll just have to see what these doctors come up with. i talked to the Dystonia Foundation and they have never heard of FMS coexisting or being secondary to dystonia and they strongly suggested i take this up with my neurologist. i will do like you say and make lists. its hard to tell what is causing what with me because i do have other health problems. i'm not really bothered or worried by another diagnosis of a disease because i'm so used to having bad health problems my whole life so it isn't anything new. i can't believe, however that doctors would doubt people who are obviously hurting. i mean, i'm obviuosly handicapped, so i get taken seriously. i feel for all of you who are not visibly disabled and get the run around because of it. i'll have to see how these doctors will react about it. i'll be sure to let you know what happens.
can i ask you all what have been your experiences with this disease? how has it effected you? what can i expect?

also, what can i expect these docs to do about this? how exactly is it diagnosed? what are they going to do to me?

thank you all very much. i hope to talk to you soon!

Angie

Hi Angie, how funny that you would be "ahead" of us because you have an obvious disability! I just came from seeing my girlfriends (which I usually do on Thursday nights) and two of them told me how good I looked and was I feeling better??? (I was a sobbing mess last week). The pain was so bad today that the meds didn't touch it and I spent my afternoon napping with my daughter. NO I DO NOT FEEL GOOD REGARDLESS OF HOW I LOOK! Whew,lol! Now I feel better! I've been making gratitude lists and praying for relief from pain and acceptance along with the strength do deal with a chronic illness because right now I don't feel like I've got it. But I have had several reminders of how much worse it COULD be and how lucky I really am despite the FM.

Angie, FM is primarily a "rule out" illness. They will most likely draw blood (they've taken so much of mine that the last time I had it drawn my 4 year old asked me if I was going to die if they took ALL my blood) and they can rule out a lot of stuff that way. I'm guessing that you've already had quite a few tests run for things like nerve conduction and MRI's and arthritis and stuff like that? Most likely you won't need to have any really invasive or painful tests. My doc had suggested an IB workup but I refused since I don't see any point in putting myself through that just to get my normal test results.........negative.

As far as living with this, for me it's one day at a time. I do have good and bad days and I'm trying to do whatever I can to increase the good days and for me that includes exercise,nutrition and quitting smoking. Oh yeah,sleep is a big one, my bad days directly correlate to the no good sleep nights.

Hi Angie, how funny that you would be "ahead" of us because you have an obvious disability!

yeah, i think i would have it easier in a sense that i'm obviously disabled. i mean, i "belong" in that parking spot, of course i'm in pain i've "obviously" got something wrong with me. but i also get the extreme the other way. people are surprised i can carry on an intelligent conversation. geeez, the cripple girl can speak! i'm constanly being asked if i need help, get comments all the time that "you can drive?", pat on the head and told how awful it is...geeez. i've gotten used to my chair, but i feel degrated all the time, humiliated sometimes by how pitiful people see me as. i can't walk, my speech slurs or i trip over words, i get muscle spasms, people just find it pitiful. i hate that. but don't worry what other people think, just do what you think is best for you.

yeah, they took blood for rheumatoid stuff. i've had another problem that has yet to be diagnosed. i had an MRI done for a tumor but they found none. i have a severe endocrine problem. my hormone levels are way high. i've heard FM can be aggravated by hormone problems??? i had some of the worst effects from the hormone problems. it gave me disfiguring acne (i viewed this as much worse than my wheelchair...it was awful), i'm not talking "zits", but bad cysts all over. i took accutane three times. my hair falls out from it also. so i'm on medicine for that.

i had those tests all through my childhood, but it was to diagnose my neuro problems. i had 3 MRI'S, nerve conductions (those suck), EEG'S, CT Scans, X-Rays and everything else you can think of. so i don't know if they will put me through that again or not. its difficult for me to lay still and in certain positions.

sounds like its just like living with my neuro problems, one day at a time. actually i go by the hour, one hour at a time. hey, i really appreciate it! thanks to you and everyone for your help. if anyone else also has suggestions, stories, advice i'm listening! take care to all.

Angie


As far as living with this, for me it's one day at a time. I do have good and bad days and I'm trying to do whatever I can to increase the good days and for me that includes exercise,nutrition and quitting smoking. Oh yeah,sleep is a big one, my bad days directly correlate to the no good sleep nights.

[/B][/QUOTE]