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RSD

Regional Sympathetic Pain Syndrome- For all that have suffered, and that are suffering from this horrible disease, may this be a place you can go to share your thoughts and get information.

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alicesmom said...

3 months ago

I am so lost. Diagnosed like weeks ago. Original ankle break in 1994, recent hardware removal on may 13, 2016. Friday the 13th.. The day I got this horrible disease. Yay.. I don't know anybody who had this.. Can't find support. My daughter and husband are already done. I'm a burden. I can't do this to them. I can't deal with this pain. They treated me like I was a drug seeker, so no pain meds for me... So I spend the day crying and shaking and feeling alone... Help...

Ladykay1976 said...

about 1 month ago

Rmayeaux3 said...

4 months ago

Has any CRPS patient tried Coolief procedure for bilateral upper extremities and face?

mybell said...

12 months ago

I injured my ankle 17 months ago at work. After being in a cast 2 times, the Dr. kept telling me that my pain was normal and it would get better.. It never did. I went to another Dr. and he knew I had CRPS by looking at my foot and symptoms. I started going to PT and put on nerve pain meds. Nothing was helping. I started to get nerve blocks and was told the more I had the better my pain would get. The pain is getting worse and is now spreading up my leg. I have decided to have the nerve cut. Has anyone been giving that option or has had it done?

Batterybob said...

about 1 year ago

My wife was diagnosed with RSD in1993. The last 6years she has been in and out of mental hosp and the dementia seems to be getting worse. The best thing we ever did was to have the pain pump put in but I don't know if it was to late. They say this desease eats away at your muscles and tissues so does that include the brain Very frustrated. Bob I'm sending this but have to go to work if you respond and I don't answer that is why. Just needed to see if anyone knew if ther was a correlation between the two. My wife is only 60 years old

about 1 year ago

robertino said...

over 1 year ago

HI EVERYONE I WAS TOLD I HAD RSD DOES ANYONE HAVE THE SAME SYMPTOMS AS ME. IT FEELS LIKE A BAD WOUND DEEP DOWN IN YOUR SHIN LOTS OF BURNING .I HAD ACHILLIS RUPTURE WAS TOLD HAD RSD DOES ANYONE GET SORNES FROM RSD ALSO GET SHOOTING PAINS THIS MORNING WOKE UP TO TIGHT CRAMP THAT I HAD TO GET UP WALK IT OFF ALL DAY MY LEG STAYED SORE ACHY..MY FOOT TURNS PURPLE SOMETIMES RED NOW MY OTHER FOOT IS TURNING PURPLE BUT NO PAIN

erica sagherian said...

about 2 years ago

My life continues to be deconstructed by full body RSD. I have been suffering for 9 years. I own my home outright and due to disability may end up homeless, I need help desperately to pay back local taxes. Does anyone have info on help available in Pa.?

RosaR said...

about 2 years ago

Zonker said...

about 3 years ago

Well, it is in the middle of the night and I am in so much pain the sleep is the last thing on my mind. I don't know if any body is out there or if any body will read this but sometimes it helps with the pain if I can find the right thing to take my mind off of my ugly friend. In 2007 I was hurt at work and had to have rotator cuff surgery on my left shoulder. By the time that Workman's Comp got their act together it was now 6 months later. The surgeon that repaired my shoulder told me that if we would have taken care of the problem when it happened it would have been corrected with physical therapy. Now, I needed radical surgery to mend the problem. By the time I got out of my cast in which my left arm was up even with my head for six weeks. I started in with RSD. Every time they tried something to help with the pain, it made it spread more. I had ganglion bocks and all it did was spread the pain. I finally was fitted with a trial spinal stimulator to see if it would give me any relief. It had only been in for one day and the wire rolled off of the spinal cord. They went a head and operated on me and put in the stimulator. Three days after getting home from the hospital I developed such a pain in the back of the neck in the base of the scull I figured that I would not live through the pain. When every thing was calmed down I had mercia in the full length of my spine. I was so close to death that I felt I was going to give the hour and minute I was going to die. At that point RSD was through out my whole system. When I told the doctor that the RSD was in my ear, eye, mouth, nose, throat, they would say RSD doesn't go there. When I would get it in my chest down my arm, up my neck, into my jaw and ear the doctors would tell me that RSD doesn't do that. I finally had to let the doctors know that the one that wrote the book on RSD didn't have RSD. Seven years later, I go to work for 8 hours a day and come home so wore out from fighting pain all day I set in the recliner until dinner time and if I am still in such pain I have to eat in the chair and not go to the table. We have five children and sixteen grandchildren. It breaks my heart that I can't and do feel good enough to visit and enjoy them. I could go on and on. I really am tired of this 24 hour problem. I'm not sure if I feel any better since I started typing (1.5 hours because of the pain in my arms and hands) but it is after one a m so at least some of the night is gone.

RosaR said...

about 3 years ago

over 2 years ago

22seagull said...

about 3 years ago

I am looking for a support group that might have information on any new strategies for dealing with RSD...or whatever it is called. Broke my arm in 5 places back in 2001.

RosaR said...

about 3 years ago

over 3 years ago

I was actually looking for a support group for caregivers to endstage Renal Cell Carcinoma, and did not find a "group" online. However, in looking for that support group, I came across the RSD group instead. I have had RSD for nearly 13 years now. It started after I was in a car accident, and I injured my right arm by it slamming into the passenger's side dashboard upon impact. Once at the hospital, I was told that I had seriously injured my right arm,and due to the impact I had something called a scafolunate dissociation and that I needed surgury right away. I agreed and I think the operation went reasonably well. However, there were 6 pins placed during the surgury and apparently at least 2 of the pins had "migrated" during the time inbetween the 1st surgury, and the time of the "pin removal surgury". Unfortunatly, the surgeon did not take a final x-ray before beginning the pin removal surgury, and to make a long story short, he accidently partially severed my radial sensory nerve while he was "digging around" where he assumed the pins should be. Soon after, I was diagnosed with RSD in my entire right arm,. Nearly 7 months later, my entire right side has been affected,(right arm,the whole right side including my right breast bone, right rib cage, and all the way down my right leg, and most recently, the whole way up my back/spine, and up thru my neck. I am on numerous medications, and have been in a wheelchair since 2003

sherrys1969 said...

over 3 years ago

My name is Sherry, and I have had RSD for 5 years, it is a horrible disease that affects the nerves and the entire body. My RSD is located in my left arm, I had surgery on my ulnar nerve and the original doctor cut the cutaneous nerve, thus is how I got RSD. When I first starting getting symptoms I had burning, stabbing, pins and needles, throbbing, cold to hot, hair changes, nail changes, mottling and bruising in my arm. The RSD had now spread to the right arm, and I have mottling in my legs,but have not been diagnosed with it in my legs yet. I lost a state job of all of this, all I want is my life back. I find it so hard sometimes because everyday your in pain, and I'm sure others with RSD can understand, that is why I have started this support group, in hopes that we all can learn from each other. I do have a spinal stimulator, that if they would have gotten it in earlier may have helped with it not spreading, but we all know that work mens comp takes their good old time, and you have to fight for everything that you get from them, so that was not the case for me!! It took me over a year to get the spinal stimulator, and it works about 40% and over time it has stopped working, as everything does. I hope to here from anybody with RSD!!

10 months ago

10 months ago

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