misc-from rachelle ( delete if neccessary )

February 27, 1999

Hello Group,

Well, from reading my overdue e-mails, I guess nothing much has been going

on Whoever it was that wanted snow, please come up here ( Rhode Island )

and get it, PLEASE ! That's half the reason I'm behind on my e-mails.

I have been investigating some other disorders to try to explain my hip

pain, and came across a triad of disorders that are almost verbatem in

descibing my particuliar hip malady. Surprisingly, or maybe not, alot of these

people have very obvious symptoms of RLS and a few descibe what could be PLMD.

These are, Reflex Sympathetic Dystrophy (RSD), Sympathetically Maintained Pain

(SMP), and Causalgia - www.rsdnet.org.

The latter was the dx my Rheumatologist had last determined. I have now had

faxed over from my Neuro and Rheumo to the Pain Clinic where I had had a trial

Nerve Stimulator placed in my spine-didn't work. I'm looking for more of a

nerve block type of tx. So, my question is rather -is the RLS worsened by the

RSD, or visa versa!? I'm going to be e-mailing them to give them the RLS

website to give them some info, might be helpful, maybe not, but it's worth a

try. Sharing is caring.

I really hope that this group doesn't self destruct because of semantics. I

do not see this group as being the same one that I joined almost a year ago

now. I do see the same " support " as it once did and I don't think that's it

fair to our " newbies " . I myself have caused some ill feelings towards others

and maybe even still some are not thrilled with me. That's okay, because I'm

sure that I'm not thrilled with them either. But that's not the point. The

point is, this is for support for people with RLS/PLMD-regardless of severity

or meds vs nonmeds. We're all fighting the same battle no matter where we are.

In this battle against the " Beast " , we all have areas of concern as to how to

handle certain life situations-regardless of what they might be. From A to Z,

going to the movies, trying to hang on to our jobs, obtaining disability,

family fuctions, stress from any where -including a Support Group that's

feuding, relations with our spouses/signifigant others, children, parents, in-

laws . All these things do affect the way our RLS reacts. So, it only makes

sense that we address the things in our lives that come up. This also includes

remedies/meds, thumpers, heating pads, diets.

I think that you get my drift and I hope that, as usual, things will calm

down and ryme and reason will prevail

Thank you and Adeiu Sleep well le R.I.

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