Quote:
Originally Posted by Jennijojo
Carolinarose, how did your diagnosis come about? Man this is a really alienating feeling cause I usually am pretty good and being close with my suspicions and this crps stuff doesn't sound like a short term or easy thing. It actually reads very scary.
The hand specialist I went to is one of the best and my family keeps reminding me of that when I say he's got to be wrong. He thinks having my body crushed was probably what started this. But the only thing that broke was my back. And I had that reconstructed (when I got insurance years later).
What did your doctor suggest? Did you know about this (what do I call it? A disease?)and did you suspect it?
I can't figure out if I should go back to being a hairstylist and just having terrible pain. Also I drop things alot and do things like accidentally poke my finger in someone else's mouth lol luckily it was a long term client. The doctor said use it or lose it but my brain says rest it dont test it.
All I've been referred to is a pain management specialist. Who am I going to ask my questions to? And really is this a forever thing? As I think I can tie so many things to being a possibility of another affected area. Ugg I am just so glad I found a place to talk about this. Cause that's what I feel I need to do.
Can anyone tell me, as I've been reading lots of drs are resistant to acknowledging this syndrome but they were really old articles, am I going to be met with my gp for instance, thinking myself and this hand specialist she sent me to is nuts? (His reputation is top notch. He's been noted for being a leader in digit regeneration research so he's no quack)
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My diagnosis was a last resort. I broke my leg (fibula) and ankle 15 years ago I had to had screws and plates put in. I have always had issues with my leg off and on and limited mobility. Recently I noticed a red spot on my ankle that was very painful, then 2 months later another red spot farther up my leg and intense pain with touch or just movement then the skin got tight and another spot showed up on top of my foot. My GP sent me to Orthopedics who did x-rays and a bonescan which showed increased inflammation in the right leg, decreased blood flow to both feet, and a fracture in my left foot. The ortho sent me to an orthopedic specialist who did more x-rays and said I had irritation from my metal but he didn't advise removal because it only causes more damage that leads to more pain. So he sends me home with nothin. I go back to my GP tell him all of this armed with all of the test results and he is the one to mention the pain syndrome. His words were "some sort of pain syndrome ". So he refers me to the pain clinic, I did alot of research on my on throughout this whole drawn-out process and found nothing even close to the symptoms I was having together until he mentioned the pain syndrome and it all fit. The pain clinic has me classified as RSD or Reflex Sympathetic Dystrophy, they are really the same thing that is just how they dictated it. The only treatment I have been offered at this point is a sympathetic nerve block and m-contin pain meds.
It is really a tough blow but having an answer is the first step in the right direction. Only YOU know what you can and can't handle. I know how it is with the naysayers, my boyfriend has been to my appointments with me. He knows what the outlook for this is in my case and still he treats me as though I should still be doing everything as I was before. As far as your doctor's research your area for someone who deals with CRPS try to get in to see them.
I hope some of the veterans of the group can answer some of your questions better.
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