Stephanie Schiffman
Wow there are more myths out there than I thought. OK, RSD does not "cause" fibromyalgia. The problem is that fibromyalgia and RSD are sometimes confused in diagnosis by doctors that don't understand them. RSD itself is used as a garbage pail diagnosis. Most of us with RSD have wide varieties of symptoms and effects. Doctors can't even agree on RSD - except that they can't cure it. So - the answer is, if RSD is not treated quickly and properly it often becomes intractable (doesn't go away) and can begin to affect other parts of the body. It also causes bone loss. You can decrease the probability of bone loss by getting plenty of calcium and making sure you use the affected limbs as much as possible (within limits of your Phys Ther or Doctors advice). Weight bearing on an affected leg can help slow down bone loss according to the doctors I have spoken to and the articles I have read. Also the quality of your pain will change over time as will the skin and temperature changes. My skin started out being ice cold and mottled blue and stayed that way for a couple years. Now it looks pretty normal other than extreme dryness, cool to touch and excessive sweating. I also have decreased hair growth on my legs. My legs will occasionally get red, but it's rare. Pain has increased and it has spread from my left knee to both legs, hips, my back, and shoulders as well as my right upper arm. Also have neck problems. I use a number of medications, but the most important thing I have found is to get the most sleep you can. To aid in this Zanaflex is a muscle-relaxer that knocked me out (nothing else does). Getting just 4 hours of sleep greatly improved my health (I went from a motorized wheelchair at all times to a manual wc and then to the use of a walker on good days and wc on bad). Do lots of research, question all meds, don't put up with dismissive doctors and try to get a pain management group at a major medical center or teaching hospital. If you are made to feel stupid, whiney, or like a mental patient, request a doctor above her/him even if it is the head of the dept. You should never be denied pain relief due to the fear of addiction. There are too many studies discounting it. If you need help IM SLSchiffman on AOL or you can write me. Make sure you put RSD in the subject line.