Junior Member
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Join Date: May 2013
Posts: 64
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Junior Member
Join Date: May 2013
Posts: 64
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The name change RSD to CRPS
This has been a hot topic with RSD people as new people are diagnosed with RSD now called CRPS.
RSD was named in 1985, and at that time it was a positive change. The name is/was starting to get recognition as not a psychiatric condition, or just a pain condition. It is a neuro disease and dystrophy will happen in later stages or years of the dis- ease.
However, the name was changed after several doctors did not see dystrophy. I and so many who know, see this as another mass distraction.
Doctors are doing implants, ketamine coma's/ injections; using dirty drugs that are seizure drugs with horrible side effects.
RSD responds to name brand Klonopin sedating the nervous system,
Hyperbaric oxygen deep dives 20+ ; name brand liquid Hytrin (no longer available)
Each treatment that has worked has been taken away, or costs outrageous amounts of money.
MS and Parkinson's for example have treatments approved for their disease.
RSD or CRPS has none.
We are going backwards to a complex pain condition from a neuro disease of which it is.
So this is causing issues within our community.
I do not think that CRPS is a national name as it is only our coding in the US that has changed. I think these are huge issues that should be looked at, as well as us that have had this disease for too many years and know what happens to the body.
Remember; money is an issue to many who profit from our misery.
RSDSA was started by 2 mothers who had children with similar symptoms. We had surveys to compile different kinds of information to try to determine how we got RSD as well as what we we're doing to help it.
Now we have a corporate paid association, with many doctors on the board of directors.
Let's discuss this openly as to just what is this disease, rather than the name. Maybe after good discussions, we can decide what is the best name,and do a national oz Petition to get 1 proper name.
(Although personally, RSD is getting world recognition) we just need to come together and not let 'them' divide us. Let's bring symptoms forth...
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