Hi Debbie,

I have dystonia in my right shoulder and CRPS-like symptoms in my right arm. Like Annie, my symptoms started after a venipuncture. I had pain, weakness, numbness, etc localized to my right arm for almost two years before I developed fixed dystonia in my right shoulder and back. The dystonia in my shoulder and back cause my shoulder to droop and my clavicle to stick out.

I just had my second round of EMG-guided botox about 3 weeks ago. My first round of botox was in October, and it did provide some relief. The muscles in my shoulder that were injected did hurt less and less often. However, I did experience more headaches and increased pain in my right arm (but that could be from increasing the amount of lab work I am doing). About 8 weeks after my first botox injection, I noticed that some days my shoulder would be raised up closer to it's correct position.

Since my second botox injection, things haven't been feeling so great though. The pain in my arm is increasing (to levels near what I first felt in the months after the venipuncture--but again, that could be due to increased use). I also have developed pain right under my clavicle and in the shoulder joint. It seems to me (though I have not confirmed this with my doctors) that this new pain is from stretching of the joints/tendons/nerves/etc in my shoulder, as the muscles that used to support the weight of my arm and keep my shoulder in position are weakened.

I would also take love2laugh's advice and mark your trigger points and keep track of which points are 'worse'. I keep track of my trigger points, then my neurologist uses an EMG to guide the exact locations for the botox injections. However, that may not be possible with spasmodic dystonia.

Good luck! I hope you find something that helps.

Thank you for your response. I am going to take the advice about marking pain area. It is unforgetable. I have clear painful areas. The dr went over all the areas with me. We chose to wait three weeks to see if nerves are just regenerating after surgery. Sometimes after a normal surgery there are dystonias as nerves wake up. This is what I am hoping for. I am prepared to do whatever it takes though. Life is a lot more comforted talking with you all.

Thanks so much,
Debbie

Bumping this up for Ali

I know it has been a while since the post, but I was wondering how you are doing? I have a 14 yo daughter with RSD in both of her legs she just got her first round of botox.......it is such a life changing/altering/disturbing disease.