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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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#1 | ||
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Senior Member
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I have RSD in my neck/L arm for a few years now, but it has just been "officially" diagnosed. In addition to the classic burning pain there is funky color/skin changes down my arm and I have bouts of profuse sweating.
Within the last year, I have new issues that have me wondering if the RSD has spread. I don't get to see the pain clinic again until WC approves it (and I've been waiting 1.5 years (lawsuit pending) 1. tennis elbow on R side. No, not from playing tennis ! I attribute it to all the time I spend playing computer games, using just my R index finger, but R elbow is in "locked" position on edge of wing chair. Dull achy pain. Red blue splotches now on R upper arm too. When I sleep on my R side, I have my R arm outstretched......and I sweat just at the elbow area (wet spots on sheets to prove it !) 2. I had an umbilical hernia repair last year. Incision healed up, no problems or pain for 8 months, but now I get shooting "electric" zappers periodically....not constant. No skin changes. I don't think I'm sweating from my belly button 3. L hip bursitis....started almost one year ago I think because in bed I usually lay on my left side and when I sit in my chair I lean more on the L hip because I am crooking my neck to the right to help relieve the neck pain. The pain is deep and achy. There are no skin changes around my L hip, but I have noticed recently when I sleep on my left side, I sweat profusely from my L hip.......even when I'm not sweating from the L arm/neck area. Can you have RSD spread even without the skin changes ? The R elbow and L hip are achy....typically bone/muscle/tendon pain not burning nerve pain. Could it be that my whole sympathetic nervous system is just screwed up so it makes me sweat from wherever there is pain even though the RSD has not spread there ? Any thoughts ? |
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#2 | ||
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Magnate
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I have been told that you don't have to have all the symptoms to have rsd. My rsd spread has come without skin changes but the pain is super high that is for sure and I have been tested for everything under the sun that could it be otherwise. I will say though that I have had some other pain conditions through this that I have thought may have been rsd but were not and did pass but it took so long. I seem to heal slower then molasses. Anyhow I hope you can get into the doctor asap to get more direction on what is happening with you. Till then I know how hard it is but it may not be a spread so try to stay in the moment I guess that it was I say to myself. Easier said then done I do know. Many better wishes
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#3 | |||
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Member
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When it spread to my arms all I had was the pain, no temp or color changes. I was unsure of the whole deal. I talked to a good friend of mine and she had the same thing for her arms and places on her body. Just pain but no temp or color change. I had pain in my arms/hands/shoulders for about 2-3 years before the color and temp changes happened.
I have no temp or color changes on my body, just pain and burning. Hugs, Karen
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Laugh until you cry, don't cry until you laugh. Living, loving and laughing with RSD for 14 years and counting. |
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#4 | |||
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Member
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Dubious was kind enough to post a good article on another thread, see http://neurotalk.psychcentral.com/sh...271#post516271 On page 5 of this article written by Dr Edward Carden the spread of RSD is described briefly.
I asked my doctor if he knew when RSD spreads or had become centralized and he told me that he is of the opinion that it is somewhat centralized from the very beginning, we all just have different paths that it takes and he does not have the answers for me. In my case I have experienced spread laterally to my left arm, however it can not be defined as RSD spread because there are no visible signs of RSD on my arm. There is no swelling, color or skin changes at this time, I do have occasional swelling in my hand but my doctor has never seen that. I have intermittent burning & deep cold bone throbbing pain, my joints seem to be the most affected. My hand turns ice cold. I know it is RSD pain but how can one convince a doctor of that. They typically think it is psychosomatic, I've even questioned myself about that! I've been told it is just tennis elbow. It is like the whole left side of my body weakens with this pain and the cycle of pain ping pongs from joint to joint along the left side of my body. I have been told by another doctor that spreading is impossible, "it simply doesn't happen with RSD". I have not returned to that doctor since he clearly can't help me. I was relieved to see that some doctors do understand the nature of RSD progression and to see it in writing in this article posted by dubious (thanks). It made me understand that I'm not imagining what I am experiencing. MsL |
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#5 | ||
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Junior Member
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I had been wondering about having all the symptoms or not, and what that meant. I haven't had any noticeable sweating in my leg, just the weird colors, intense pain, swelling and temp changes. It hasn't spread much, and when I do over do it, it climbs up my leg, and down to my foot, but once I rest it a day and then work it the next day, it settles back to the same area. Any one else had this happen? I sure hope so, most people speak of spreading RSD, and that isn't something I look forward to. Had a scare the other day, my right leg started screaming, at the height of my left's freak out. I gotta tell you, I was ever so pleased when it was ok in the morning. |
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"Thanks for this!" says: | Dew58 (06-03-2009) |
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#6 | |||
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Magnate
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Finz, i'm so sorry to hear about everything that you are dealing with right now and really hope things start setteling down for you real soon!!
![]() I remember when my RSD first spread, I was terrified and got VERY depressed and frustrated which I guess is only 'natural' when dealing with something so devestating. My RSD started in my left leg and then spread to my right arm after another injury and to my left arm earlier this year. There was no denying that my RSD had spread as I had all of the classic symptoms of RSD and my arm went purple and black within a matter of hours after the injury. I saw my PM Doctor the day later and he diagnosed a spread of the RSD and I had to go and have intense Physical Therapy as my arm locked up into a fist. Has anyone ever mentioned a condition called Dystonia to you? Some of the symptoms that you described with the tennis elbow sound similar to it. I have Dystonia in my left leg and right arm and it has a pretty bad complication of the RSD. My leg is rotated out to the side in eversion and my arm locked into a fist for nearly 6 months. I have tried all sorts of muscle relaxants to try and get it to go away but none have really helped and we are now looking at Botox as a last resort. I would definitiely look into the Dystonia if I was you as it is a complication of RSD that some people have to deal with and can get overlooked or misdiagnosed quite often. I really hope that you can get an appointment with your PM Doctor real soon. It's horrible that so many people have to wait so long just for WC and things! Its really important that you are treated as quickly as possible with RSD and they should know that! I'm sorry that I cant help you that much. Please know though that you are in my thoughts and prayers and if you need anyone to chat to, I am here for you as I DO understand some of what you're going through! ![]() Take care of yourself
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To the World you may be one person, but to one person, you may be the World. |
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