Hi Debbie,

I'm sorry you are having these symptoms. When RSD was discovered (4 years after I got RSD) one of tests was a nuclear med bone test. It showed bone loss. Have you had any bone denesity tests on your elbows and knees? I've had RSD 12 years-full body now and my elbows are twisted. Also have fibromyalgia, which a lot of us have both RSD and Fibro.
Have you seen a rheumatologist? or orthopedic DR?
I know it's one of my fears not to stay mobile. When my toes started to curl up and not touch the floor, my Dr. gave me exercises to do dailey. I did them every morning in a warm bath, and dailey in the swimming pool. A few months later they were back touch the floor. I believe in stretching and toning of muscles, even if it isn't what I used to do. I used to play tennis 5 days a week, water ski, snow ski, walk, run, swim, aerobics, etc. Water exercises, needs to be 86 degrees or warmer. are really good for us to strengthen and keep mobile.
Are you with a physical therapist? I had two frozen shoulder and got both back thru a LOT of PT and massage therapy. Massage therapy really excelled my range of motion. I wasn't so fortunate when my hand froze up, Didn't get started soon enough, that's when I found out I had RSD. Got partial range of motion , but partially crippled. Sounds like you might need to see a specialist to help you. Isn't there meds to help build bone density and vitamins and certain foods. I work out with 1 lb. weights. not too long, but enough to keep strength. I'm sure others will have some ideas what they do. Don't give up!!!!
Do you have a good Dr. that you like? Take care of yourself, Loretta