NeuroTalk Support Groups - CRPS and loss of function.

NeuroTalk Support Groups (https://www.neurotalk.org/)

- Reflex Sympathetic Dystrophy (RSD and CRPS) (https://www.neurotalk.org/reflex-sympathetic-dystrophy-rsd-and-crps-/)

- - CRPS and loss of function. (https://www.neurotalk.org/reflex-sympathetic-dystrophy-rsd-and-crps-/195497-crps-loss-function.html)

It is very difficult thinking about the unknown. That is generally what causes me major anxiety! I try my best to think one day at a time, but sometimes you can't help but think of the unknown.

I also dealt with chronic pain prior to this monster. I injured my back years ago. As a teen I had knee problems. In my 20s I was diagnosed with RA. I have TMJ and had a headache and migraines for years until they figured it out. I know still have chronic migraines. I think all the medication has caused in increase in them.

Sverre054 I went to school to be a cop. Wanted to be one since I was 5. It was my back injury that messed that up for me. It took me years to come to terms with not being able to do it. I was a 911 operator when this RSD took that from me.

Quote:

Originally Posted by sverre054 (Post 1021720)

Hello,

New to this forum and wanted to get some feedback from others with CRPS.

My condition started at 26. I was in the fire fighter academy and two weeks from graduation. After coming down from a roof 30' up, I started to wring out my heavy leather gloves, when I felt a sharp pain in my arm, and my hand seized up and loss function. I was also working full time as a delivery driver, so ended up having to be medically withdrawn from the fire service and work for 3 months.

I went through months of PT and saw many doctors who initially diagnosed me with a crushed median nerve, carpal tunnel, and dystonia. My work forced me back to work, due to threatening me with termination. I was authorized to only do light duty office work. Needless to say after 3 days back, new management forced me back on the road due to staffing issues, and threatened to fire me(which would cause me to lose my insurance). After 2 days the same injury recurred, but worse. I have been out of work since then(3 years). I have had several surgeries, seen 20+ doctors, hundreds of hours of PT and been on over 20 medications.

I have had severe pain, emanating from my hand and shooting up through the elbow. It is in my right hand(I'm right handed of course) and my hand has lost all strength(less then 30 psi). My thumb stays clasped against my hand, and I have a hard time opening any of my fingers. Also had my hair on my hand/ar, fall out, and my skin has become very thin.

After about a year I was officially diagnosed with CRPS, and have been struggling to deal with it since. My pain level has steadily increased over time, and my hand function is worsening. It's very frustrating being in my late 20's, and being so effected by a condition that is hard to diagnose, hard to treat, and not much is known about. I have also been told the condition is somewhat rare in men my age.

Just wanted to see what others use to treat there condition, and if anyone else how has CPRS in the arm/hand has dealt with the loss of function. There's quite a bit more to the story, and I'm sure I could fill in more details, if anyone has questions. Thanks

Sorry to hear that at your age you will have to deal with this, minus a cure for the rest of your life! As far as meds and doctors, find a local GP and a local Neurologist that will both talk and listen to you and both talk and listen to one another. It took a couple of years after I got sick in 2006 to find the right Doctors. Unfortunately you're about to face a wide range of Dr's, PA, and others that will tell you everything from it's all in your head to you'll be better next year to on Young "Pain Doctor" that told me after a year of Psychotherapy that since they felt I was not "Depressed" there was nothing they could do for me. She said "Well I guess you're one of the unfortunates" and asked me not to come back again, even though I had worked with her office for a YEAR! But I kept pushing and looking and finally found a good Local GP and Neurologist that have followed and stuck by me for years now. Don't give up they, the Medical world is now starting to take CRPS/RSD seriously and that will me studies and hopefully help!

Quote:

Originally Posted by sverre054 (Post 1021720)

Hi sverre054! I was only 24 when I developed RSD in the right side of my face, that was 22 1/2 years ago. I was treated very aggressively with stellate ganglion nerve blocks and medication, this put me in remission for many years (had minor flares that were manageable with meds). No one really knew much about RSD back then and maybe for a while ignorance was bliss for me :rolleyes: But looking back at issues I had, I believe they were RSD related. Spread for me began in 2007 and I now have it in my face, hands, shoulders, feet, left leg, left arm and trunk.

I agree with others, make sure you have a good primary dr and a good pain management dr...and that they communicate with one another. You have to be your own advocate. If one dr tells you that it is in your head or he/she doesn't understand RSD/CRPS, then move on. Everyone responds to different treatments, hopefully you will find something that works for you.

Try not to think of how bad this can get and that there is no cure, etc. Live each day the best to your ability.

All the best,
Nanc
:hug: