Hi Tracey, Welcome to the group here. Most of us went thru several Drs. and misdiagnosis. You are very fortunate to be early in finding a diagnosis. Anything within 6 months to a year has a good prognosis for CRPS. Many on here have both TOS and RSD. I'm not very familiar with TOS, but there is a TOS group on here. I've had RSD for 12 years, but wasn't diagnosed for 4-5 years. Mine started the day after a left breast surgery for two benign tumors. I knew the next day something was very wrong. My entire left arm was at least doubled in size. They withdrew liquid 2 or 3 times with syringe. Then the shoulder completely froze up. Surgeon sent me to a Rehab. Dr. She said it was very bad and and send me to physical therapy, should say physical torture. Had about 100 treatments, strapped down, with pain meds in me. Also had massage therapy beforehand to soften up the tissue, I paid for that.
After about 50, they referred me to orthopedic surgeon. He wanted to operate and break it loose. I said no thank you. Finally got about 95 percent usage back. We moved from Oregon to Arizona. and shortly after the move got frozen shoulder in the right shoulder. The Oregon Phsio said it may transfer over to the other side. lI just thought all along, I got the problem, because my Dr. went on vacation the next day and no one sent home the pamphlet directing the stretching exercises to prevent frozen shoulder. So mine froze up big time. I was so mad. Well, we got settled, daughter finished college, got married, and 3 months after the wedding my husband and I took some good friends water skiing. I felt a strong pull in my left hand, swelling, pins and lots of pain. and then it became frozen, the fingers. Saw a rheumatologist and he said Rheumatoid Arthritis and Fybromyalgia. I didn't feel the RA was correct diagnosis as the tests didn't show a Rheumatoid factor. So i made an appointment with an Orthopedic Hand Surgeon and when he walked in the room he said RSD is one minute. My hand was motley colored, purple and reddish. Cold sometimes and clamy and hot and sweaty other times. I was always going between hot and cold. He started me on Physical therapy and ordered a tens unit. Oh, before that, went over to the hospital for nuclear med tests. Showed bone loss and rsd.Came back to AZ. and got a hand specialist with rsd and therapist next door. Also had a good neurologist familiar with rsd and ran more tests. started on some meds. I got partial use of fingers back. Kinda like a claw now and won't bend any more. I never had the sensitivity like not being able to wear clothes etc, but I did do a lot of therapy to desensitize. running my fingers thru, cotton balls, coffee grounds, rice, popcorn, just all kinds of different textures. My soft kitty is my favorite feeling. At least I can cut my own food now. It has been no song, decided not to have the nerve blocks. They can make it better if early, and worse under some circumstances. Maybe a few months later noticed right hand doing the same. more therapy and got it early so no frozen fingers. Went down to both feet and legs. haveburning red/purple burning feet and pale ice cold feet. I have the frontal headaches almost dailey and also across the back of head. heck pain. Skin red bumps all over body. in left hear and nose. left side of face numb over to half of the lips. burning behing the left eye. I also have trigeminal nerve disorder that affects half the fact. Swimming in 86 degree water is the best, and I do stretching. Miss the tennis and water and snow skiing. 4 years ago had a very bad seizure, blood pressure dropping to 40.icu for 4 days.I was always size 4-6 and now gained 50 lbs. the anti-seizure meds are the culprit. The meds changed my taste and now am a vegetarian. My husband is so supportative and daughter and son in law. Daughter is court reporter. I tell you, it's so important to get the right Dr. If there are support group meetings in your town, I personally would want to talk to some and find out who specializes in this area. You need the correct diagnosis. Sometimes you can call the Hospital Education Program, or Support Group Meetings and find out who is working with certain neurological
systems, Some Pharmacists and well informed. They know the better Drs.
For me, going to a Sports Injury Hand no time.
I also have the collar bone pain and lower back pain. Sleeping at night is IS NOT GOING SO GOOD. oH, dO YOU HAVE SLOWNESS OF SPEECH? LIKE GRASPING FOR THE RIGHT WORD Take care of yourself, your friends, Loretta