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Reflex Sympathetic Dystrophy (RSD) (CRPS) Message Board


Reflex Sympathetic Dystrophy (RSD) (CRPS) Board Index


Hi Zamora

The scariest things about RSD are finding out about it, then thinking what your life will be like. I've been there too. At first I was glad for a diagnosis, but then scared by what I read and saw.
But one thing to remember is RSD is different for everyone. My RSD is in my right arm, from fingers to shoulder. It started four years ago. But I've worked hard to keep using my arm, so I've still got good use (most days!) and it doesn't look any different. We don't all get all the symptoms of RSD. And the sooner its diagnosed, the sooner it can be treated and contained. So it doesn't have to be a timeline of stages over your head, there is a lot of hope and some good dr's out there who know a lot about RSD.

There are a couple of members here who've had carpul tunnel surgery, so they'd be better at answering your fears about future surgeries. I do know that RSD can be a complication of CT surgery, its not that they might have done something wrong.

The worst thing you can do for your hand is stop using it. I've kept myself typing and bending my fingers, and in the early stages, even held a flat piece of plastic in the palm of my hand to keep my fingers straight, so that they didn't curl in and stay that way.

There are lots of treatments for the pain, so hopefully your dr can start you on something soon to give you some relief.

And ask us all the questions you like, we're happy to help you. The more informed you are of RSD and treatments etc, the better you can adjust to living with this.

And by the way, the prognosis for treatment of RSD is GREAT when its caught within the first six months. So don't see it as a life long thing, that won't do you any good mentally. It may not be that way for you at all. Keep positive and see a pain doctor as soon as you can. They can help advise you about future surgeries too, from an RSD perspective.

x Kate
THANKS FOR ALL OF THE REPLIES FROM ALL OF YOU! I'VE LEARNED THINGS I DID NOT KNOW - THIS IS A "GOOD" THING! :) SO MANY SAD STORIES. I THOUGHT "RSD" WAS SOME [B]REALLY RARE[/B] DISEASE OR SOMETHING ONLY I (or a few others) HAD. I WANT TO SAY "IT'S NICE TOO KNOW THERE ARE OTHERS OUT THERE" - BUT THAT WOULDN'T COME OUT RIGHT, BUT I THINK YOU ALL KNOW JUST WHAT I MEAN!!

TO UPDATE YOU ALL RIGHT NOW (just last week) I WENT TO THE "DEFENSE QME" (insurance co choosen - qualified medical examiner) - WHO WILL WRITE A PERMANENT & STATIONARY (P&S) REPORT; on 9/24 I GO TO THE "APPLICANTS QME" (my atty choosen qualified medical examiner) WHO WILL DO THE SAME - WRITE A P&S REPORT (which will be 2 of the 3 p&s reports that will be "rated"); and FINALLY GETTING MY PRIMARY TREATING DR. TO WRITE A "P&S" REPORT ISN'T EASY, AS HE DOES NOT BELIEVE THAT I HAVE ACTUALLY REACHED A PLACE WHERE 6 MONTHS CAN GO BY WITHOUT ANY CHANGES IN MY SYMPTOMS; AND HE ONLY WRITES P&S REPORTS ONCE 6 MONTHS OF NO CHANGE HAS BEEN ACCOMPLISHED. UNTIL SUCH TIME THAT I AM "P&S" - NOTHING HAPPENS (as far as concluding my case) - LIFE JUST PASSES ME BY - IT DOESN'T EVEN SLOW DOWN ANYMORE.

I HAVE BEEN TOLD THAT [B]RESOLVING MY CASE[/B] - WILL MAKE ME [B]"FEEL" [/B] SO MUCH BETTER. I THINK I WILL FIND THIS TOO BE TRUE.

MOST OF YOU ALL SEEM TO HAVE A SEMI POSITIVE ATTITUDE ABOUT THE OUTCOME OF YOUR RSD. WHERE DOES THIS COME FROM? NO ONE, NO DOCTOR, NO ATTY, NO MEDICAL ANYTHING HAS LED ME TO BELIEVE THAT ANY OF THE "TREATMENTS" OUT THERE, TOGETHER WITH LOTS OF MEDICATION (something I forgot to mention - i am on 180mg MS contin per day; 1800 mg neurontin; 3 tylenol/codine #4 per day, paxil & klonopin & i've gained 90 lbs since 5/02) IS 100% EFFECTIVE - I'VE BEEN TOLD QUITE THE OPPOSITE - MEANING THAT - ALL OF THE TREATMENT IS [B]TEMPORARY[/B]; AND LETS SAY FOR EXAMPLE - MY DR SAYS THAT WITH "IV LIDOCAINE INFUSION" TREATMENT THE PAIN RELIEF IS GREAT UP TO 85%, BUT ONLY LAST A MAXIMUM OF 6 MONTHS; AND A HUMAN BEING (health wise) SHOULD NEVER HAVE MORE THAN [B]"2"[/B] OF THIS FORM OF TREATMENT IN A LIFE TIME. SO TO ME - EVERYTHING THEY OFFER ME - IS ONLY A "TEASE" FOR LACK OF A BETTER WORD.

CAN YOU ALL HEAR MY FRUSTRATION OR WHAT? I'M SORRY. HERE I GO VENTING AGAIN! HEY GUYS, BELIEVE ME I COULD GO ON AND ON, IF I WASN'T IN SO MUCH PAIN (right now) FROM JUST TYPING ALL THIS - BUT WHEN I THINK ABOUT WHAT I USED TOO TYPE (72wpm) AND NOW I AM "CHICKEN PECKING" - I GET SO PISSED!!!! THIS "RSD" WASN'T SUPPOSE TO HAPPEN - IT SHOULDN'T BE!!! I WAS SUPOSE TO GO "BACK TO WORK" 3 TO 6 MONTHS AFTER MY LAST SURGERY (in otherwords be out of work temp for only 1 year) THEN MY LIFE WOULD BE "BACK TO NORMAL"! I WOULD ABOUT DIE, I THINK, IF I COULD COME CLOSE TO "NORMAL" AGAIN!!!! SORRY HEAR I GO AGAIN, VENTING. I CAN'T TYPE ANOTHER WORD (it hurts), SO YOUR ALL LUCKY - I HOPE I AM NOT TO INTRUSIVE - IS ANY ONE IN CALIFORNIA? GOODNIGHT & THANKS FOR LISTENING!!! LISA





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