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 01-24-2008, 01:32 AM #1
hopealot hopealot is offline
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Default A ray of hope

Two years ago, I was scouring the Web to find anything about RSD and more specifically, about cures, since the local RSD specialist not only confirmed a diagnosis that I had RSD in my left foot/ankle, but informed me there was no cure for it. The pain was debilitating, beyond any pain I'd ever known physically;I couldn't bear to stand on that foot. I was looking for information and also for hope. I wanted to know that others do recover from this.

Two years and multiple doctors later, after physical therapies, water therapy, Tramadol, Lyrica, nerve blocks, weight training, psychologists, books by Dr. Seigel, hearing one specialist tell me there was hope and that it was possible I could get better (priceless words), special diet attempts, yoga, swimming, lots of prayer, and replaying the theme from Rocky, I am better. I don't know if it's remission or cure, but the cold sensation eventually disappeared, the feeling of walking on broken glass while someone pours scalding water on my my ankle has mostly subsided, the foot no longer looks like a bear's claw, it's also no longer blue on the bottom, I have weaned myself off the Tramadol (after many attempts and failures), am down to less than 75mg (from 300mgs) of Lyrica a day and am wanting to write this simply so someone else who is where I was two years ago can hear someone who has been there write what I longed to read: There is hope. Every persons body responds differently to the RSD experience, and although some doctors may tell you there is no cure, or that you were diagnosed late, or that the chances of you overcoming it are minimal, there is hope. I am much, much, much better and do believe there is hope.
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Old 01-24-2008, 02:38 PM #2
terry terry is offline
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Hi Hope alot,

I'm glad you are feeling better!! I'm sure your story will give many people hope. My son has RND (reflex neurovascular dystrophy) in his stomach - I would give anything to take his pain.

I have a question for you - you wrote that it felt like you were stepping on broken glass - I have recently been getting that feeling in my foot - at this time it is annoying , not painful - how did yours start? I hope you don't mind me asking. I recently went to the doctor and they did blood work on me - I'm not sure what they are looking for. Anyway when I saw that you had that sympton it made me curious.

Thank you and I hope you continue to stay pain free.

terry
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Old 01-24-2008, 04:00 PM #3
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I am so glad that you are better, that is excellent news and it gives us all hope.
Terry, I am so sorry about your leg, if there is anything I can do just ask.
Please let us know what the blood results are
Thanks
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Old 01-24-2008, 06:41 PM #4
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Hi Terry,
The broken glass feeling arrived the first day I was allowed to put weight on my foot after ankle surgery. I had been in a cast for 6 weeks, but when they removed the cast my foot looked like a bear's claw, so they put it in a cast for another six weeks and told me to start putting weight on it. It was a nightmare to put weight on--made me want to scream--and although I complained, the nurse insisted it was normal and to keep at it. I remember thinking, wow, all people who have surgery go through this feeling of walking on broken glass? How horrible!! Of course, it was RSD but they weren't able to diagnose it at that time. I don't know if that helps you at all. My hope is that your pain does not worsen and that your son's pain is alleviated soon, somehow.
Hopealot

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Originally Posted by terry View Post
Hi Hope alot,

I'm glad you are feeling better!! I'm sure your story will give many people hope. My son has RND (reflex neurovascular dystrophy) in his stomach - I would give anything to take his pain.

I have a question for you - you wrote that it felt like you were stepping on broken glass - I have recently been getting that feeling in my foot - at this time it is annoying , not painful - how did yours start? I hope you don't mind me asking. I recently went to the doctor and they did blood work on me - I'm not sure what they are looking for. Anyway when I saw that you had that sympton it made me curious.

Thank you and I hope you continue to stay pain free.

terry
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Old 01-24-2008, 07:45 PM #5
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Heart Hi Hope!

I think it's wonderful to have hope and I'm so glad you're better and you're sharing you good news with all of us.

I'm so happy for you...

Thanx again!

GHL
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