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Reflex Sympathetic Dystrophy (RSD) (CRPS) Message Board


Reflex Sympathetic Dystrophy (RSD) (CRPS) Board Index


Dear AnnieBell,
I so understand your frustration. Have you asked to be seen by a pain anesthesiologist? That is how I was finally diagnosis. I am seeing another one 4 1/2 hours away to have my RFA (burning nerves in my back from arthritis caused by using a cane and favoring my left CRPS leg). The RFA's only last 2-6 months and I have to do it on my lower and middle back. It seems I am in this viscous cycle that when I get one done, it takes 3-6 weeks before I'm able to get out of bed and 8 weeks till I feel the effect. By this time the other part of my back is about ready to be done again. It has become where my back is in more pain than my leg at times. I talked to my rep for my stimulator and she said considering the amount of relief I'm actually getting out of it, I might consider having it taken out!?!?!?!? I'm afraid. It seems every time they do surgery on me, I get worse. This disease has to be the most frustrating and sometimes hardest things I'm facing now. I've learned that we as patients need to do the research and we need to be our own advocates. I would bring my doctor stuff I read about my disease. When he wouldn't change my pain medication after being on it for years and it not working, I found a book called the "The War on Pain". It actually had a chapter about this disease and how to keep trying till you find a drug that works for you. It was written by a doctor who was from CA and was on a board or something like that. Are there any pain specialist in your area? I would try that too. I changed doctors four times to find a doctor who would listen to me. I was told in the beginning I was too young and it was all in my head. One doctor, every time I went to see him, acted like I was on trial and questioned me every time I went in. I felt like a criminal. Another doctor threw his hands up and said I don't know that I can do anything else for you. So, I understand. We can't go take an xray and say see there it is. It isn't something that is black and white. In today's society with so many people trying to abuse drugs, the patients who really need it are getting punished. So when you have a disease as extreme as ours, with doctors that are convinced before we even hit the door that half of us are drug seeking, it makes it so hard to get someone to understand and treat us. I'm sorry I dealt with it for over 3 years. The problem I have is my pain anesthesiologist told me that if someone would have listened to me in the first 6 months, there was a chance it would have went into remission. Sorry for venting...... I'm just upset that my life has come down to being able to go out for a couple hours a day on good days. The rest of the time, I have to be laying down or the pain is too much. I know that God has a plan for all of us... I need just to accept it. I wish you the best of luck... You are not alone.





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