Reflex Sympathetic Dystrophy (RSD and CRPS) Reflex Sympathetic Dystrophy (Complex Regional Pain Syndromes Type I) and Causalgia (Complex Regional Pain Syndromes Type II)(RSD and CRPS)


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Old 10-02-2012, 12:50 PM #1
KirstyMarie KirstyMarie is offline
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Default New to the forum -CRPS

Hello all!!!
I have just joined this forum. I have had CRPS for nearly nine years. I have it in my right foot/leg, my back, my left hand/arm. I am also having symptoms in my left leg now
I get so much pain, colour changes, swelling (lots!!!!) weakness, tingling and more!! It look me along time to get a diagnosis, I have regular appointments with my pain specialist. I have regular nerve blocks in my back, they only usually last a few weeks.
I have been to London a few times now to see different specialists, as my symptoms are pretty bad, last year I was in hospital, it was the worst 2 months of my life. Nobody knew what to do,I was in so much pain, I was also incontinent, which at my age was awful! I had to rely on everyone to help me.

I am hopefully going to be trialling the Spinal Cord Stimulator, any opinions/suggestions??

Also what is your story?? Would be nice to talk to people who know how hard this is. Xx xx
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Old 10-02-2012, 06:01 PM #2
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Hi to neurotalk, it is great to have you here. You will meet a lot of great friends here who understand what you are going through. Feel free to ask questions or answer posts. We share our information and this is how we learn about our disease.

Me, personally, I fell a few years ago, crushing my right foot and leaving me with RSD. I know have it in both feet and a feeling of running ice water running down my thigh. I also have a lot of nausea and vomiting.

Any who, welcome to the group. I'm glad you came.
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GOD help me be faithful in the midst of my suffering. Alt1268
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Old 10-04-2012, 09:58 AM #3
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In july it will be 30 years since I had an injury that left me with extensive nerve damage in my foot and leg, but for most of that time I managed to stay active and mobile through exercise. It was only this last decade that running became too difficult and the redness and pain began to spread. I never knew about the problems that can arise from nerve pain, or that I was staving off the progression through exercise.

I am still working on a diagnosis as the injury, in my case, is extremely visible so health care providers have a difficult time seeing beyond it. What I've been finding out is that knowledge, research, questions and discussions are our greatest tools to understand this affliction and in many cases, beating it back in to remission. Good luck to you! and welcome to the forum.
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