Hi Debbie,
Looks like I hit the button twice? smile Debbie I know despair and fear of losing our mobility is REAL.I was wondering if they have support group meetings near you. We have once a month meetings at a local hospital. It's actually at a neurological institute that is very well known nationally-Barrows Neurological Institute. The meetings are so upbuilding. We have had Drs. a really good one was a pharmacist who started a pain management group at the hospital where he worked. Time for questions and then social time afterward to visit in exchange information etc. I found out about it thru RSDS on web and then put in my zip code and they gave me name and phone number of the group leader. I think we have 3 in the Phoenix area and one in Tucson.

I went thru a long period of despair, really the grieving process, loss of life before RSD and life now. I had to pass dwelling on the life before and let go and look for things I can do and be grateful for. My Dr. is a psychiatrist, and neurologist and pharmacologist. so basically he is pain management and helped me emotionally work thru these losses. It is not easy or quick. I've found things that make me smile and laugh, old movies. my cat, reading, I've collected several albums and am going to organize pictures according to different trips. I did this for years , then fell back a few years ago. But I get such joy getting out albums and remembering various trips, friends, etc. Keeping in touch with friends and family , writing cards, phone e-mail are all good ways to reach out and how love.
I'm really excited about losing weight I gained on Neurotin and Lyrica. I'm close to 20 lbs now. so I have a ways to go, but I have not doubts I'll get there along with toning exercise. I was thin my whole life, had to be to keep up with my daughter, Had her when I was 31. We played tennis everyday, snow ski, water ski, horseback, swim, aerobics, boy we were active, hiking etc. I miss it sure, and have done a lot of crying, but I have clothes in the closet with the tags still on them! smile And not just a couple---
I hope you can find a support group or maybe start one. Please don't give up, I know it's hard. Right now I've got my first break out of lesions- so painful
I take vicodin also. Something that really calms me is Lorazepam 2 mg. 3xday. It's an anti-anxiety med and my Dr. and I both feel i get more benefit from that than just about anything. I went of two double dosed anti-depressants and went on lose dose of Cymbalta, which is also effective for fibromyalgia, advertised as the first drug approved for fibro. I can't believe how much better I feel on it instead of the other two drugs.
I had terrible electric jolts, jerks, spasms, etc night and day and was on neurotin 3200 mg. to make them stop. Then Lyrica was working for a lot of people so I wanted to try it- so went off the neurotin and was on 300 mg of Lyrica. My weight gain was very depressing, so Doc and I have been working together in going down till I'm on just 50 mg. and no jolts. So next call him and hopefully will go off.
I've had about 150 PT and 200 massage treatments and feel that is a huge reason for my mobility. I have full body, generalized 12 years now. The massage therapy is still wonderful to keep toned and moving. Don't give up. Please let me know if you find a group or even another person. Sometimes you can call a hospital's education program and ask if there is any support group for RSD or even chronic pain groups. That would be wonderful to get together with some others. Would you let me know? I'll see if I can find something out too. Take care, Loretta