CRPS and loss of function.
 

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 I was also working full time as a delivery driver, so ended up having to be medically withdrawn from the fire service and work for 3 months.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

I started with rsd in my right wrist and hand and it traveled up my are to my shoulder. I know have it in all four limbs. I'm on neurontin, percocet, advil, zoloft, zanax and voltaren gel. I've had it for about 2 1/2 years and though it looks a little better, the pain has increased. I have also just been recently diagnosed with fibromyalgia which causes widespread pain. PT gave me a home exercise program and I use a putty ball that they gave me to try to get my fingers to move as much as possible. I'm sorry you have this disease and hope you feel better soon. My thoughts and prayers are with you.

I have it in my left arm/hand, resulting from 3 surgeries to do median nerve release at the elbow and wrist.

My initial injury ( median nerve entrapment at the elbow) Initially started with the fingers curling in and arm curling up. It took over a month to get the fingers and arm moving with PT. I couldn't even force them open.

After my 3 surgeries and my RSD diagnosis I have little strength in my hand/arm. My fingers are slightly curled in. The fingers/area of hand the median nerve controls are numb. I occasionally have times where the hand will cramp up and curl in. It increases my pain level to unbearable amounts.

I try and use my "bad" hand as much as possible. As it is use it or lose it. In the process of using that hand I have dropped, had things stuck in my hand, broken numerous dishes, etc. I can say that I can notice a big difference; in what I can accomplish that I couldn't a couple years ago. I think mostly because I have modified how I do things somewhat so I can accomplish tasks.

Yeah that's pretty similar to my situation. My hand always make a fist and curls in. I can open my hand most of the time, but I can't fully function my thumb. It's in my right hand, which I'm right handed so I really force myself to try and be active and use my hand. The pain sucks and is terrible, but I do have a pretty high pain tolerance. It does get horrifically bad, and gets worse throughout the day.

The loss of function is the really bad thing. Sometimes my hand works ok, some times I can't even move my arm or hand. I consistently drop and break things, and even things like driving or typing can really set off my pain.

II have been trying to look into new surgeries or treatments, but doctors are hesitant due to my age, and the fact that they risk vs reward ratio isn't great. It's a shame this condition is still a relative mystery to doctors.

Another question I have; Does CRPS trigger anxiety? It seems like like the pain and the fear of being in pain while out, make me sometimes loathe going out or completing a task. I don;t have panic attacks or anything, but is this something that I should ask the doctor about treating.

My rsd has triggered alot of anxiety. I'm afraid of falling and breaking bones because of fear of rsd spread. I'm afraid of not knowing what each day will bring with rsd. And I'm afraid of how all the pain meds I'm taking will affect my body. So I do see a pyschiatrist who helps me by prescribing me zoloft and xanax for anxiety and depression along with my other pain meds for my rsd. They help alot. It's a personal decision, but it has helped me to get through the days a little easier. Take care and I hope you feel better soon whatever you decide to do.

From what I've seen the majority of onsets are from surgeries, especially multiple surgeries in one area. Compare your pre-op and post op symptoms. Focus on physical therapy, diet, spirituality and psychological health.

Wish you didn't need to find us but WELCOME!
Since the surgery to "repair" my broken wrist it has been dysfuntional for 9 months ever since.
I could move my fingers and did not have searing pain during the 5 days I was awaiting surgery.
I have gradually gained a LITTLE function of my hand and wrist (14 nerve blocks and 65 P.T. visits later & other trials). I'm on several meds. of course as well.
My only salvation really has been a great pain mgt. Dr. who really knows first hand about CRPS and a really great P.T. who recognized the RSD/CRPS in the first place.
This is a great group with lots of support. We've learned there's no "magic bullet" for this monster but we share ideas and advice. Not every drug or treatment works the same on everyone with this disease but we still share.
That's why we need awareness and research for RSD/CRPS so much!

Yes my fingers now have a natural "curl" inward. With much effort I can get them straight, but they don't stay that way and it causes pain. There are times now when I guess things are just right where the hand and fingers will cramp much like the issue I had originally.

My last surgery will be 2 years ago in January. I can say I have better function now than then, mostly attributed to learning how to do things in different ways to get by. I live alone (aside from my animals). So I have modified different things along the way to try and get by.

I also have severe tendinitis in my other arm and hand from overuse and compensating for the other arm.

An increase in stress, anxiety and depression are pretty common in RSD. I take Cymbalta for the pain and it benefits in helping the depression. My doctor added Valium for relaxing muscles and it is helping my anxiety.

I'm still what I call new hahaha 2 years since injury ing arms by overdoing paint n paint stripping, but I'm a 12 survivor of chronic pain. A back injury caused that. Either way I hate it. But I can handle the back pain an spasms better then the crps in the arms. The right hand which I am right handed is the worst. At first was diagnosed with carpal tunnel tennis elbow blah blah. My left one got better after pt for 8 weeks, but it has been bothering 6 to 8 weeks and progressive worsening dr just told me yesterday it's crps spread. I've been on many pain meds, steroids, and creams. Lidocaine wrapped in saren wrap helps. Hydrocodone helps. Steroids help but I hate 45 lbs gained. But honestly the fear, the aniexity the unknowns of crps are the worst! I've wanted to cut my arm off, suicidal thoughts and some drugs made them thoughts worse. I. Now I'm not gonna commit sucked but I can think....lol....I know I can't beat this, it will never go away, but I say everyday CRPS WILL NOT KILL ME, I WONT LET IT.

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.

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!

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: