[Soxx]

I was in a car accident almost 6 years ago, i was rear-ended on the freeway, i was almost stopped and they were at full speed. anyhow afterwards my right arms started aching. i used to say it was like a sprained ankle that someone had slapped as hard as they could. i hate being in crowds because i'm scared someone will bump my shoulder. I also hate shaking peoples hands, because it ALWAYS hurts but i dont want to be rude or have to explain why i wont.

I have 3 days, 1: i can move somewhat easy but get tired very easy, constant pain and cant lift anything or reach my arm out. i think of this as a "normal" day 2: I'm drained, no energy, can barely walk, stiffness in my neck and shoulder, whole body aches and burns, extreme tenderness to touch and cold and headaches. 3: is the worst and strangest to me, all the symptoms of day two but i cannot move my head because the right side of my neck hurts too much, cant move my shoulder, feels muscle locked, and my hand is swollen, usually cold and turns blue. the longer the episode last the more my arm changes color. there are no triggers, it can happen at any moment for any given amount of time, shortest was an hour, longest had been almost 2 days. the more active i become the more frequent they happen. i was working at the time all i did was type. i lasted a year there before the episodes were happening every single day and they let me go due to absences. my coworkers were so used to seeing it change color they called it my smurf arm. when i go in to see a doctor during an episode they tell me that they cant do anything for me and basically say i have to wait it out, just sit or lay and dont move..

Doctors dont know what to make of it, depending which doctor(ive seen over ten because i went where i could afford it) and they it's either RSD or fibromyalgia but i dont seem to fit fully in either and they will not say i have both. My right leg has begun to burn more like my right arm does and it feels like it's getting worse. i ask if fibromyalgia can spread and i never get a definitive answer, they just say that its so new that they dont know for sure.

Im not here to complain or whine about my condition, i just want to know if anyone has something similar or even opinions of what you think. they have never found any damage and ive been poked, had shots, scans, vascular, physical therapy, massage (my massage therapist actually said it felt like working on a corpse arm) nerve tests and everything shows normal. i get some relief from acupuncture but state medical doesnt cover it. so i live off gabapentin, tramadol, cymbalta and nytriptyline. even just typing this is making my arm flare up, but im almost done. please leave your opinions or any ideas, advice or your story if it's like mine. it's been almost 6 years and im so tired of not being fully diagnosed..

[finz]

Just saw your post as I'm heading to bed, so this will be brief....

Don't limit yourself to RSD, fibro, or both.

Your days sound a heck of a lot like my days and I'm TOS, RSD, and fibro (and my headaches in the occipital area with a migraine component are from occipital neuralgia.....all tied in to the neck/upper back pain)

That's not to dx you. Obviously, none of us here can (or should) do that. Just sayin' you might want to look up TOS too.

It took me YEARS to get dx'd too. Whereabouts do you live ? What kinds of docs have you seen and what dx's have they made ?

[AintSoBad]

Soxx, I agree w/ Finz.

TOS stands for Thoracic Outlet syndrome, there is a section here on Neuro talk about it.

I suggest you see a good neurologist (one that's familiar with these disorders), you might need to see a hand or thoracic surgeon (for a dx) also.
I too have these disorders, (amongst others) they're managed, not cured.
I'm not dx ing you, but you should have these things ruled out! (or in).

If you're near a fairly big city, I suggest you find the 'Cheif of neurology' at a teaching hospital (university). It took 7 years for me to get a diagnoses, and it was from Dr Schwartzman in Philly.
(I understand he's now retired).

I hope this helps, and please understand, I'm not trying to diagnose you, just tell you a little of what I've been through....

Hope you get some relief!


Pete



asb

[Soxx]

Thanks to both of you guys, thats exactly what im looking for, just curious about other options or questions i should be asking that maybe i havent thought of yet. Since a majority of everyone here has probably been poked and tested a million different times, you may know some tests to try or ones that will rule out other things quicker. Please keep them coming!

-Callan

p.s. dumb question.. what is dx? lol id like to think i know a lot of online faces and stuff but id rather ask to be sure

[KathyUK]

Originally Posted by Soxx

p.s. dumb question.. what is dx? lol id like to think i know a lot of online faces and stuff but id rather ask to be sure

Dx is short for diagnosis. Took me a long time to work that one out lol!