Hi Kelly,

I'm so sorry to hear that you are in so much pain and suffering so much without getting any answers - I really wish there was something I could do but please know you are in my thoughts and prayers!! I certainly understand the travelling to and from doctors - my Pain Management Doctor is an hour away from me and my other doctor is 3 and a half hours away in London and the ride is so bad for me and by the time I get there, I am usually in a lot of pain!!

I also suffer from severe spasms in my RSD limbs. As anyone ever mentioned Dystonia or Myoclonus to you? I have been diagnosed with both of those conditions and my Neurologist say's that some people with RSD have them ... especially if they have severe RSD or a case of full body!! The Dystonic spasms make my leg rotated out to the side at a 45 degree angle and the myoclonic spasms cause my leg to jerk up and down in the air without me being able to control them at all!! When my Doctor first saw them, he had no clue what they were and was amazed as to how bad they were and ordered lots of tests and it later came back that it was a severe complication of the RSD!!

I have been on LOTS of muscle relaxants including Baclofen, Kenadrin, Propranolol, Diazepam etc etc and nothing has worked up to this point unfortunately!! My Pain Management Doctor did say that the spasms are usually best treated with Physical Therapy exercises and it has helped me somewhat, although the spasms have no where near gone!!

I would definitely mention it to your doctor and see whether or not he/she thinks that you could have any of the symptoms of Dystonia or Myoclonus ... not many doctors are familiar with it unfortunately so it is best to see a Neurologist as that is the doctor that helped me the most!! I have put a video of the myoclonic spasms on here before - i'm not sure if you have seen them but if not, please ask me and i'll post the link again for you!!

I know it's hard but try not to panic too much!! I know it's REALLY scary and it's hard not to panic but I have found that if I am in an anxious state, the spasms appear more often and it winds the entire cycle of pain, spasms, depression etc up.

If your Doctor doesn't know what RSD is that much, it would probably be best trying to see if their is another one in your area that could offer you more help. I had to see 2 Pain Management Doctors and who knows how many doctors and neurologists before I was happy with one that I like and knew I could trust!! Unfortunately, not many doctors have seen such severe spasms and sometimes they just assume that because they haven't seen them before that they can't be happening ... that is NOT the case at all and my doctor realised that when treating me!!!

I hope you get some much needed help real soon and I am keeping you in my thoughts and prayers and if you ever need someone to talk to, please know that I am here for you because I DO understand!!!!