Quote:
Originally Posted by buppy911
I am so glad I found this forum. Now I have not been diagnosed with RSD nor do I know if I have it and I'm not sure where to go from here. This is my story. Back in the first week of April I noticed a small area on the palm of my left hand that was a little bit sore...only when I pressed on it or bumped it. I thought nothing of it until it got worse a few weeks later and started to get red. I went to my pcp ( I am also diabetic so this concerned me). She put me on antibiotics for a few days. They did not help at all. I was admitted to the hospital where they put me on iv antibiotics (vanco). I was on this for a week while my hand/wrist continued to swell and got redder. I saw orthapedics, infectious disease, and a few other doctors. They decided that it needed to be opened up and cleaned out and wanted to take some tissue sample cultures.
They did the surgery and took the cultures. When they opened up my hand/wrist, there was no sign of infection (they had been calling this cellulitis) All of the cultures came back negative. All blood tests were normal.
They did not know what to think. I spent 15 days in the hosp (this time) and went home. A week later my hand started to "flare up" and I was admitted back into the hosp for another 12 days...coming home with a picc and on iv antibiotics. This did not help. We stopped the meds and my hand seemed to be doing better. Now it's been a month since it's "flared up" and all of a sudden, it's back again. I am going to therapy 3 times a week...it's been 3 months since surgery and i still can't make a fist. It is getting more and more stiff, swollen, super sensitive, burning sensations, sharp shooting stabbing pains in my wrist, sweating, my finger nails on that hand grow like mad and it hurts like a sun of a bumble bee!!
My therapist mentioned RSD and I did some research...every single sympton they list...I have in that hand and wrist. I'm not sure where to go from here. My pcp has me on neurontin, but I just started it and it doesn't seem to be doing much of anything. Do I see a neurologist?
Any information would be greatly appriciated!
Thanks in advance  |
Hi Buppy 911, Welcome to NeuroTalk- So sorry you are having all these symptoms. They sound very familiar to me and probably everyone here. Although, I wasn't diagnosed for 4 years, did get immediate treatment following surgery and subsequent symptoms needing therapy-frozen shoulder
After many therapy sessions and massage therapy, went into remission. The therapist said at the end, don't be surprised if you get frozen shoulder on the other side. I thought that was strange, as my surgery was just on left side.
After a year or so, I did get frozen shoulder on other side. More therapy and another remission.
While water skiing felt pull in hand, redness, sensitivity, couldn't even cut my own food or peel a potatoe. fingers curled in, shiny skin and swollen knuckles. with the shoulder had stabbing pains. sweating in hand, frozen fingers, couldn't make a fist, burning as like a fire, so much pain. I was diagnosed by a rheumatologist as having RA although tests were negative. I disagreed and went to a sports injury group orthopedic (hand doc) He knew in 1 minute-rsd. Did a dye test on bones of left hand, confirmed rsd. ordered a Tens Unit that helped and started therapy. (I had flown to Oregon to see this group) Came back to Arizona and saw Neurologist and another Hand Ortho Doc and more tests confirmed RSD -This ortho had a therapy group that were very good -They also did desensetizing. Because of delay didn't get full motion of fingers. But can use hand, although strength has dimenished. About a year later-moved to other hand. Started therapy right away and have full range of motion in right hand. Then moved to one foot , then the other, back, full body and iinternal organs.
If you are near a larger City, a RSD group usually can be found. Can contact RSDSA and put in your zip code and find support group nearest you.
They usually know the local RSD Docs.
A site of a 40 year practicing RSD Doc in Florida is rsdrx.com puzzles list
It is 150 questions from rsd patients and his answers. good info.
I agree with a previous comment on psychiatrist help. It is such a life altering event, that we usually need help to cope with our losses, pain, etc.
My Doc is a neurologist, psyciatrist, and pharmacologist. It's not a common combination, but when I found him 6 years ago, I am so grateful. I had already been thru grief couseling with parents death, but that helped me tremendously cope with a chronic pain condition and disabiling in so many ways.
This is such a wonderful group of caring, compassionate friends who really understand what you are going thru. I guess because RSD comes following surgery or injury, a hand orthopedic doc might be a good way to go. Physical therapist also have a lot of insight. Some neurologist might be aware of RSD. Please ask any questions you might have. One of your new friends, loretta
