Lisa
have you talked to a neurologist about botox?

even though I had some sort of odd reaction to the botox when I had it... it helped me a lot. My neuro teaches about it's use. He has told me about people coming in with "claw" hands and so forth who are cured after botox injections. He has used botox for RSD a couple times. He has known of it's use in other RSD patients with great success for severe cramps, spasms and I think it's called dystonia?? where you can't open your hand? or muscles?

I think my reaction was caused by the way it is injected - with a needle that is electrified, similar to an EMG. It is used to find the EXACT center of a spasm to inject the medication into. I had an EMG in my leg and foot the first time I had RSD (when it was in my foot) and I could barely walk for 2 months.. the pain the EMG caused, and the SEVERE spasms it caused were the same type of pain as what happened from the botox - but no spasms this time because of the botox.

However -- after the botox... I no longer had the absolutely horrible muscle spasms in my arm, shoulder and upper back that made me cry, double over and see white. They were like getting hit with a cattle prod - I have been stung by a cattle prod and hit an electric fence (used to work with horses and be on a farm) and it was that same electric feeling. Botox cured that. Before the botox, I could not open my arm up hardly past 45 degrees. Now I have a lot more movement... but it's not 100%. It takes away your strength...I could not lift a pop can for weeks with that arm that was treated.. but after it was a lot better (your strength comes back). My reaction was WAY off the charts in pain - even for RSDers. So, don't let that stop you. It WAS worth it. I am considering having it done again, this time under my arm, in the arm pit area.... to see if it will free up the spasms there that a year of therapy and exercises have been unable to break free.

It can take a while - 6 weeks or more for the maximum effect of the botox to take effect. I don't think I realized how much it helped me for 3 months due to the reaction I had to the needle itself.

Ask your doctor about it. If you need to.... PM me and I can give you my neuro's name for your doctors to call if they need info on this.

When I looked into it last summer, there was quite a bit of info out there on botox and RSD. I imagine there is more now.

You will probably run into posts I have made on the old board, or other boards about my experience. I was pretty miserable!! No, I was in agony... especially the first 3 weeks. BUT... it helped SO MUCH!!! I would not be considering it again if it did not. Thinking of putting myself through that again -- it would have to have helped!! other that massage therapy, I think it has been the single most helpful thing I have done or medication I have taken. Also realize, I do not take regular pain medication (because I drive to work every day). If I had been on some sort of pain med, this would have been a lot easier. They tried putting me on duragesic to help me out, but I was to sleepy on it to drive to work safely, so I just had to stick it out.

My insurance covered the vial of botox (something like $1400) but not the doctor's fee for injecting it... which was about $300 due to the special equipment needed.

Also, have you tried massage therapy by a really good massage therapist? Mine does WONDERS for my spasms !! Look for one that is licensed to do cranial sacral therapy---- they have the most training. The doctor I saw at Cleveland Clinic said they are finding out more and more what great things massage therapy can do for RSD. I started massage therapy right after both my injuries that resulted in RSD.... and am convinced it is one reason I was able to continue to work after each one... and have not had nearly the problems some do. It hurts a LOT to start with, but like desensitization, it gets better. My massage therapist lets people come for partial hours if they only want a small part of their body worked on. So if you just wanted your hand worked on, she would work on you for 20 minutes 3 times a week... but it would equal one hours worth. Much less expensive that way. She likes to start with 3 times a week, then down to 2, to once a week.. to every other week.