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Reflex Sympathetic Dystrophy (RSD) (CRPS) Message Board

Reflex Sympathetic Dystrophy (RSD) (CRPS) Board Index

RSD (now CRPS)
Jun 10, 2011
Hello my fellow sufferers,
I am having a really rough time these days. First of all I have crps in both legs from the knees down and have had it for 6 and a half years. I have been in the wheel chair for 6 years. Now just 2 months ago my face and my throat were on fire and really so big I could not wear my necklace or even see out of either eye. My husband and I thought it was some kind of allergy but it was a Saturday night so he took me to the er. I walked out of there with the diagnosis of crps in my face and neck. Now I have lost a lot of hearing in my right ear but they dont know if it is crps or not. Upon my last refill, 2 and a half hour drive from my home, of my interthical pain pump.. my pd said that because I was not getting any relief in my knees she made an appointment with an ortho surgeon. I went yesterday. We are going to try shots under the knee cap for a few months, if that does not work then we replace and then the pain meds should work!!!!!!!! VERY depressed today and knee hurts even more, I dont know how but it does.
Re: RSD (now CRPS)
Jun 11, 2011
Hey Kelly,
I have had it for 6 and a half years now, caused by chronic fatigue syndrome, that I was diagnosed with about 15 years???? ago. I thought it was gone. But I have not had any injurys. I was not dianosed(spelling is bad today sorry) untill 2 and a half years ago. I have been in a wheelchair and on ssd for 6 years because even though nobody knew what was wrong it was clear something was. I started with all the oral pain meds and then the oral meds with fentynal pain patch. Untill 2+years ago when my pc doctor sent me to a spinal surgeon. I can only where open toe velcro shoes and I only do that when I am outside because the stones and dirt hurt alot. When we get me in my chair my husband puts my shoes on a little shelf under my wheelchair. Well, that doctor walked in could see my exposed feet and knees and said "yep those are crips legs and feet". By crips he meant CRPS. I have a wonderfull Pain specialist, 2 hours away but she is great. I now have moved up to the intrathecal Pain Pump implant. It relieves sometimes about from 40 to 60% of the pain off and on. That is only in my feet though. My pd sent me to an ortho surgeon because she felt that the crps had taken too much out of my knees. He is going to try a few shots under the knee caps for a few months and if that does not work then they will need replaced. Once this is done the pump meds should help but it will also spread faster. I was just recently told at the er that I have crps in my face and my pd confirmed it. I am not sure where that is going to take me.
I am have a really bad day today but maybe tonight will be better! I also do my pt at home EVERYDAY except yesterday, today, and until this shot gets in there(he said 1 to 5 days. My motto is use it or lose it! No pain no gain, pain is there anyway.


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