Hi Firegirl,
Sorry you are in so much pain. I have a neurologist that understands RSD. He is also a psychiatrist-that's why I decided to go to him. I was in my 8th year of RSD and needed help from a good Dr. and someone to help me adjust to this beast. He also had a degree in pharmacology, so I have been going to him once a month for 5 years. I have learned a lot about RSD from him. One thing besides the pain, is it's an autonomic disorder. That means involuntary organs like the heart, lungs, bladder, etc are affected. Our circulation, our blood pressure. our body temperature are affected. One reason we sweat so much. Burn and then get ice cold. I have both high blood pressure -caused by the sympathetic nervous system and low blood pressure caused by the para sympathetic nervous system. One morning I work up and stumbled into the wall and door and passed out. I knew I was passing out. Was out over an hour, maybe hour and half. I couldn't get up, but got my husbands attention to call 911. My blood pressure was 60/40-caused the passing out.
Also, when the pain goes high like you, I feel like passing out, but haven't.I have a monitor now and keep track of my pressure. I also learned anti-depressants help with nerve pain. Also anti-seizure meds help with nerve pain. Are you on any of these. Many Drs. use them, to help control the pain. I also take ativan-anti-anxiety med that calms the sympathetic nervous system down. Hope you get your pain under control-I know it's miserable. It's so important to be on the right meds to be able to have a life free of tortureous pain. And we can't sleep when we are in so much pain. Hope the best for you. Your friend, loretta Let us know how you are doing please.