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 04-25-2011, 11:48 AM #3
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Prof de Rien Prof de Rien is offline
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Location: Marlinspike Hall, Tête de Hergé
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Prof de Rien Prof de Rien is offline
Junior Member
Prof de Rien's Avatar
 
Join Date: Apr 2011
Location: Marlinspike Hall, Tête de Hergé
Posts: 14
10 yr Member
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Hi Dawn,

Not to worry, my "downer parade" can survive anything you throw at it!

My adventure with CRPS began in May 2002. For self-serving reasons, the medical community I was dealing with failed to diagnose my "classic presentation" for CRPS for over 19 months. Anyway, I now have a great group of doctors and nurses -- but we are all a bit discouraged.

In terms of ketamine, It's been a six week process thus far without any improvement whatsoever. I will certainly see the treatments through to the end of this second cycle -- but I already had to twist the arm of the doctor, as he was ready to stop after the initial cycle of three infusions. (I know subanesthetic ketamine is being given according to various protocols -- and don't want to argue with anyone about what is best. The reality, for me, is that I am accessing what is available to me by the most reputable person and institution around.)

I have CRPS (both types 1 and 2) in both arms, both legs, and in the lower part of my face. That pain sometimes has to compete with the pain of avascular necrosis, which is present in all my major joints and most of the smaller ones, too. To top that off, I am in my third year of having infected shoulder prostheses/osteomyelitis. I am, let's say, a bit worn down!

So yeah, I'll be patient, and as stress free as I can manage... but I also need to be realistic. My CRPS is severe, I'm wheelchair bound (more from AVN than from CRPS), and the state of the "science" involved in treating CRPS doesn't do much to bolster my optimism. I still run into people who want to parrot nonsense -- and these are well-educated medical professionals. Ah, but that is for another day.

Okay, so this is me... slinking off to meditate on the possibility that the ketamine might still kick in...

Prof
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