Well I'm having a rough week this week. I am in a huge flare up and been trying to get it to come down. I had neuropsych testing on Tuesday and I just couldn't believe how PAINFUL it was to THINK! We didn't even get half way through the testing. It was a mierable rainy day Tuesday and I had to walk from the parking garage to the building in the rain and it was only 65 degrees out! I was all freaked out by the time I got in the office. Then I was sitting in the waiting room and the AC kicked on and started blowing right on me...ACK! I was moving all over the place. People were looking at me a little weird but this one woman who was there knew exactly what was going on.

My memory and concentration has definitely been affected. During the testing, I started burning so bad down my right arm then the headache started..then everything hurt and I was feeling sick. By the time we were done..I could barely walk and was throwing up from the pain. I was exhausted and upset because I realized how bad things are. The Dr also did and said "I'll be cleared for ketamine".

I do have full body RSD. It has spread and I really hate the feeling like I have bugs crawling on me or being stung by bees! I look ridiculous when I'm always looking to see if something is on me. I so hate shaving my legs now also! UGG! This is very difficult in every way shape and form!

I totally understand everyone's pain with this and I'm glad there is somewhere we can all go to vent.

I finally got my family to understand what's going on for the most part. My father finally got it. I don't like to talk about it much because I get upset and cry. I try to not talk or think about it but it's hard. I have learned to relax more and sit on the floor in darkness and quiet and just meditate. I listen to music and do some light stretching also which helps a little. I can't stand lights so I'm always in the dark. I'm learning little by little. It's just so much to absorb and accept

I am not taking narcotics because I was on morphine for 2 years and came off of it in April. I went down hill after that. THe morphine masked the symptoms and made things worse. At this point I am taking 2400mg of neurontin a day, 60mg cymbalta, and fioricet every 4-6 hours (which helps) and lidocaine patches. I have allergies to most medications so it's not easy to find something that works for me. Morphine was the only narcotic I really could take. There are days that I wish I were still on it but I don't want to go that route again. It was AWFUL trying to come off of it. What a nightmare that was!

Anyways, I have been thinking about how I'd like to start a local support group. Not much is around and I'd like to get people like us together and find things that we can do together instead of thinking about pain all the time. I'm just not sure how to get that started. ANy suggestions?