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Reflex Sympathetic Dystrophy (RSD) (CRPS) Message Board


Reflex Sympathetic Dystrophy (RSD) (CRPS) Board Index


I haven't posted on here before, but I have found myself lurking around this forum at 3 am when I can't sleep. When I found your post I felt compelled to respond.

I am a 16 year old girl with RSD. It originally started in my left foot after a fracture when I was 9 years old. I was put on neurontin and elevil originally, but was non-functional on both of the meds. I don't know how sensitive your daughter is to meds, but I am very sensetive to meds, and both of those meds are very powerful for a younger person. I also had two lumbar sympathetic blocks which seemed to work for about a month and then the pain would come back. However, both the blocks were very traumatic for me, so my parents looked for any other alterntive there was to the traditional pain management treatments. I am eternally thankful that they did that because had they not, I probably would have been on morphine before I got to middle school.

I was able to keep the RSD managable for quite some time, and I was lucky in that it didn't spread quickly. Stress plays a key factor in the pain causing my RSD to go out of control when I hit high school. That's when my parents took me back to a pain management dr because we had run out of all the alternative treatments we knew of in town. The pain dr then put me back on all the meds and did 2 spinal blocks and 2 radiofrequency thermal coagulations (RFTCs).

After those, I kept having pain, and the pain dr kept saying that it was all in my head because I had had the problem nerves burned. That's when my parents went searching for things out of our city and found a dr in Texas who invented a sympathetic therapy system (STS) unit that treats the cause of RSD, not just the symptoms. I will say that I am still in Texas working with this dr, and so far my RSD has gotten worse, but that is what's supposed to happen before it gets better so that the nervous system starts a healing process. I do have a friend though that I met at the clinic who was 13 at the time she first came to the office and had only had RSD for 6 months before going and she was pain free with in a month. I am taking longer to heal because my nerves are so messed up from the sympathectomys.

I just want to encourage you and your daughter to not give up and keep looking for things that work for her other than meds because I know from first hand expierience that it is no fun to go through school on heavy medication and on the homebound program.

I will keep your family in my thoughts and prayers,
Amanda





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