[rafiki123]

I developed RSD in 2002 but went into remission in 2005. I posted earlier this week about my fear that I am developing signs of RSD again. They are still continuing but are still mild. My question now is has anyone here had a lengthy remission and then developed RSD again? If so did you experience a second remisison? Was the second time around different than the first? Was treatment the same? I would love to hear others experiences with this. I've searched the internet for info about remission but all I can find is "if treated early remission is possible" and "remission can last for weeks, months, or years".

[loretta]

Hi rafiki123,
I have had two remissions that lasted at least a year each. I didn't know I had RSD.
I had breast surgery=removal of two tumors. Dr. went on vacation the next day. I had complications and saw his partner. My surgery arm swelled double size, and shooting pains. He withdrew lot of fluid with a syringe-it was lime green. This was about 14 years ago. I didn't know that meant infection. Wasn't given antibiocs. Went in 2-3 times for liquid withdrawal. When my surgeon came back, he said you have frozen shoulder, will need 4-5 physical therapy treatments. Referred me to a Rehabilitation Dr. that oversaw my physical therapy. It took 100 treatments. I also,on my own, did massage therapy.
About half way, I refused surgery to break loose my shoulder. After I got almost full range of motion, I went I had no pain or shocks. The physical therapist said, don't be surprised if it goes to the other shoulder. I thought that sounded strange. We moved from Oregon to Arizona. After a few months here, my 'other' shoulder started freezing up. I got into therapy and even had a couple cortisone shots.
Got full range back. Was in remission again. Of course I didn't know it was remission. RSD used to be called Hand Shoulder Syndrome. It was at least another year. I was totally fine. Traveled, daughter got married, water skiied all summer. In Sept. I was water skiing and felt my left hand pull. Swelled up and lots of pain. Dr. said I had rheumatoid arthritis. I said how can that be, the tests show negative. He said, well that may be, but you have RA. I flew back to Oregon to a sports injury group and the hand Dr. walked in and said in 1 minute I'm pretty sure you have RSD. Send me to hospital for nuclear med test on hand. Positive Started p.t. in Oregon, came back and found neurologist and hand doc
got partial use of hand. too much delay, have partially paralyzed hand. From there it spread to other hand feet,legs, full body and internally. My present Dr. of the last 5 years is a neurologist, psychiatrist, pharmacologist. He is the one who said, I really got RSD following breast biopsy. Green meant infection.
So yes, I had two remissions, and treatment was the same-physical therapy and got full range of motion back. After each remission i was playing tennis every day, water skiing, snow skiing. The only drug I was on was darvocet. Should have been oxycodone or morphine. They strapped me on the table and the pain was unbearable. I also had painful shocks thru my body. Believe me, I wasn't playing tennis or skiing. No one said the words RSD until I had gone back to Oregon, knowing I didn't have RA, but something else, just didn't know what.
I really hope the best for you. I have a wonderful Dr. now, and can function. I've been able to cup back on pain meds. After 5 years of being nearly bedridden, I'm getting out and feeling like I have a 'life'. Let me know, if I can be of help. Take care, loretta

[daniella]

I have not had remission but from what I read I would think it is similar treatment. Also I know for me even in the current I respond to things different at different times. Like I have flare ups random and some days one thing may hurt me another not. I know a girl who was in remission and then it flared up again very badly but then she got a scs and is back to living life again. Like I said in your post I think we are all different and I have some new symptoms going on and am also very anxious but I try to work on staying present and doing what I need to today to get through. I forgot are you seeing a pain doc and have you been checked out with a doc who knows about rsd about the current?