Reflex Sympathetic Dystrophy (RSD and CRPS) Reflex Sympathetic Dystrophy (Complex Regional Pain Syndromes Type I) and Causalgia (Complex Regional Pain Syndromes Type II)(RSD and CRPS)


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Old 10-12-2013, 03:43 AM #1
sverre054 sverre054 is offline
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Default 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 I was also working full time as a delivery driver, so ended up having to be medically withdrawn from the fire service and work for 3 months.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
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Old 10-12-2013, 10:24 AM #2
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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.
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Old 10-13-2013, 11:08 PM #3
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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.
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Old 10-14-2013, 03:58 AM #4
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Quote:
Originally Posted by fbodgrl View Post
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.
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Old 10-14-2013, 04:03 AM #5
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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.
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Old 10-14-2013, 11:17 AM #6
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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.
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Old 10-14-2013, 11:19 AM #7
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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.
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Old 10-15-2013, 01:40 AM #8
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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!
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Old 10-16-2013, 03:01 PM #9
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Quote:
Originally Posted by sverre054 View Post
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.
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.

Quote:
Originally Posted by sverre054 View Post
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.
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.
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Old 10-16-2013, 03:35 PM #10
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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.
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