I am going through a really rough time right now. I was diagnosed in May 07 with CRPS II in my left arm after two ulnar nerve surgeries resulted in RSD. Over the last year I have been very lucky in that I have been able (at times) to get my arm to calm down to where I don't feel the pain or burning to much. The in an instant I will go into a major, painful flare for no reason that I can pinpoint. I am just wondering if anyone else experiences this type of symptom. I get so excited because I think the burning pain and deep ache of RSD are finally gone, then in a blink of an eye, I am right back to almost those first days of miserable, high level pain again. I will always have the swelling and the terrible stiffness, but the pain just puts me over the top.

Always with a flare I keep getting the feeling that my RSD is either on the verge of spreading, or already has spread. I will get bouts of severe pain and swelling in other parts of my body that never were a problem before RSD. For instance, when I am in a bad flare, my right knee swells and becomes so painful it is difficult to wear pants, bend it or walk. This will come and go with a bad flare in my arm but it is typicall not as painful or as limiting. I know fore sure I never had this in the knee before I got RSD in my arm.

Also, RSD did spread hand to shoulder in my left limb within a matter of two months after the first surgery. But at times I can feel that terrible burning pain and ache in my right ulnar nerve, just exactly where I have RSD and ulnar nerve damage in my left arm. It can get really bad but I can get this to almost completely stop with meds and rest. Something that never happens with my left arm. My left arm always feels injured and crippled.

I guess my question is this - does anyone else feel a sense that this disease (or whatever it is) is lurking in other parts of the body, just waiting to hit? That is how I feel since getting RSD in my arm. I feel so vulnerable and weakend from this disease that I am afraid any day it is going to take over my entire body.

Is there anything I can do to calm the fear and ease flares when they happen. Can spreads be prevented? I live my life in fear of further injury so much of the time because I feel like I just can't take on one more pain site.

Thanks for any feedback.