Hello and Welcome to the Neurotalk, LinJane!! You will meet many great people here who I am sure will be more than happy to help you in anyway they possibly can!!

I'm SO sorry to hear about everything that you are currently going through! I too understand just how scary it is being diagnosed with RSD and not knowing much about it. I remember when I was first diagnosed, I was REALLY frustrated at the Doctors for giving me a diagnosis but not knowing how to treat me or what to do to make me all better!!

I have RSD in my left leg and right arm and now possibly left arm also. I developed it when I was 12 years old after an ankle sprain and I am now 14.

If I could give you any advice, it would be to keep moving your affected limb as much as possible. I KNOW it hurts like h*ll but it is probably the one thing that will help you in the long run. My Physical Therapist always says that I am in pain whether I am sat around doing nothing or doing something so I may as well be doing something ... it took a while to get used to that but it now makes sense. Do you have any PT at the moment? If not, it might be worthwhile getting in to see a Physical Therapist and see if they can do anything to help you - please make sure that they specialise in RSD and other similar conditions though!!!!

I haven't had the Ketamine Infusion however I am currently on Oral Ketamine and it is the ONLY drug that has even touched my pain!! I am only allowed to take the Ketamine on my worst days (when I am in a really bad flare, done too much etc) as my PM Doctor feels that it could affect my hormones because of my age. It doesn't take the pain away completely but it takes it from an 8 and a half/9 on the pain scale to around a 6 and a half. I would do a lot of research into the Ketamine before deciding to go ahead with it ... no one can force you into doing anything that you aren't happy with!!!! No two people are the same unfortunately and everyone reacts differently so it is extremely hard to know that will and what wont work for you.

I also have the tremors that you have. I have 3 spasms; Dystonia which causes my leg to bend into strange and really painful positions, Myoclonus which causes my leg to thrash wildly in the air and the tremors. I have tried lots of medications to try and stop them but nothing has worked so far. Are you on any muscle relaxants at the moment?? Many people have success with Muscle Relaxants such as Baclofen so that might be something to look into if you haven't already.

Take care of yourself and i'm sorry if i'm rambling - it's been a long and painful day today. Know that we care about you and if you have any questions, please feel free to ask and we will try and help you if we can!!

Alison.