Dear All
I am newbie on this site and desperate to find out if anyone shares my weird symptoms. I was diagnosed with CRPS Type 1 in January this year after an achilles rupture & repair surgery done last August/September. I have most of the typical symptoms that you are all familiar with. I have the "cold" type of CRPS where my affected leg is cold and mostly I have a deep, cold, aching somatic form of neuropathic pain rather than the burning pain that many folk have.

I started to get spasms and tremors in my affected leg in mid-March which spread over about 2 months to my whole body. The movement problems have continued to get worse - affecting more and more of my body, becoming more intense and more frequent. I have constant muscle spasms everywhere, sudden jerking, tremors, spastic posturing, weakness, dystonia, scissoring, slow twisting of my limbs and body plus I have stretch reflexes. I have mostly got flexor spasming but I get extensor spasms when I lie down. I find it virtually impossible to walk even with crutches because I can't make my legs move - they are rigid and I can only slowly drag them along with huge effort. I experience periods of paralysis where I can't move or stand up although I can feel my legs. I often can't make voluntary movements but my body is constantly moving in an involuntary way. Cold makes my muscles rigid and any touch on my legs (especially unexpected) makes them jerk and spasm uncontrollably. It is also worse if I am upset, worried or nervous. It continues to get worse virtually by the week.

I am going through various neurological tests to see if there can be another neurological explanation but I have been told by a couple of docs that CRPS can't cause such widespread movement disorders beyond the affected limb. My reading of the medical literature would suggest otherwise - I can accept that it might be very rare but it does seem possible.

My plea to you guys is to tell me if you are aware of anyone with CRPS who has the extreme kind of movement problems I have. I don't have full body pain or other symptoms. I feel as if I am going crazy and the docs must think I am totally insane. Please, please if anyone else has similar symptoms or knows of CRPS presenting like this share your experience with me.

Gymjunkie