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Living with Neuropathy - Welcome to the group

Neuropathy | Last Active: Oct 27 5:51pm | Replies (6152)

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@johnbishop

Hi @dstewart318, I would like to add my welcome to Connect along with @rwinney and other members. I don't know much about Reflex Sympathetic Dystrophy Syndrome other than it is a subdivision of Complex Regional Pain Syndrome - CRPS type I (reflex sympathetic dystrophy). I did find some information about it on the National Organization for Rare Disorders database here:
https://rarediseases.org/rare-diseases/reflex-sympathetic-dystrophy-syndrome/
I also found some other information that may be helpful if you haven't already seen it.

NIH - Complex Regional Pain Syndrome Fact Sheet
-- https://www.ninds.nih.gov/Disorders/Patient-Caregiver-Education/Fact-Sheets/Complex-Regional-Pain-Syndrome-Fact-Sheet#How%20is%20CRPS%20treated?

Have you found any treatments that help you when it flares up?

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Replies to "Hi @dstewart318, I would like to add my welcome to Connect along with @rwinney and other..."

Hi John,
Thanks for the links to the rare disorder/ disease of CRPS. I’ve been dealing with it since a spinal fusion at the L5-S1 from a fall that occurred in 2011. I wasn’t diagnosed until 2015 as my Neurologist would not have an answer or offer suggestions on how to deal with the pain associated with this disease. Failed back surgery. But you will never hear of that spoken FROM someone in the medical field. I can’t have anything touch my big R toe, as pain level goes to a 7-8 just being still. Blowing on it hurts as an example.
Since joining the group, everyone, even those who are in a more difficult position than I’m in, have all been very positive and I do appreciate the different options that people have brought forth to try to make our lives a little more livable !!
My life has taken a turn for the better since I was introduced to MFR , and have been seeing a therapist weekly and have noticed the changes- in a good way.
So again, thanks John for your hard work, great researching, and a supporter of all of us who are having difficulty in their lives. You make it a little more bearable.
Mitch