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 06-23-2010, 10:45 AM #1
SandyRI SandyRI is offline
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Join Date: Dec 2008
Location: Rhode Island
Posts: 1,056
15 yr Member
SandyRI SandyRI is offline
Senior Member
 
Join Date: Dec 2008
Location: Rhode Island
Posts: 1,056
15 yr Member
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I'm so sorry. I am almost certain that I do not a compressed tendon or nerve injury, but my RSD spread anyway. And I had generalized symptoms for a long time - hands, feet, intestines. Ketamine infusions (outpatient, 150 mg each) helped me get back on my feet and off the narcs, how long the infusions will work I do not know.... but I am now back to work fulltime and trying hard to adjust to a "new" normal. The support of my family was an integral part of me getting better.

Lost Mary posts to the SCS/Pain Pump Board. She has had great success with her pain pump. Intrathecal baclofen combined with opiods has helped many people get their lives back.

Please don't ever, ever give up on future treatments. Its a constant battle with the insurance companies and attornies, etc for us to get what we want and/or need. You deserve to attempt to live life to the fullest.

XOXOX Sandy


Quote:
Originally Posted by RNcrps2 View Post
I have had such a struggle with acceptance. I have also stuggled with being on narcotics forever. I have done water therapy, biofeedback and other relaxation techniques to come off narcotics. It worked briefly, but life was no better. I was clearer which forced me to view how life will be. A lot of crying. Choices- i was put back on narcotics and to think about SCS implant. The trial(which i had over a year ago) helped but was very positional. Fear of spreading with surgery- spread? I now have generalized RSD. We don't think the tendon/nerve surgery worked-so if nerve is still compressed my RSD will continue to spread. Ketamine-i was recommended ketamine coma. I won't do that for a treatment.
Last week I woke up with RSD in my low back.
momof4
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"Thanks for this!" says:
hope4thebest (06-23-2010), Kakimbo (06-24-2010), RNcrps2 (06-23-2010)
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