Hello All,

I hope this finds all of you having a better day with your pain lessened.  I learned last Friday (Aug. 31) that my systemic RSD has gotten worse and I am "in decline."  I have no idea what this means or what to expect.  Will I wind up in an ALS-like state with a respirator?  I'm already fumbling for words and can't walk -- not a good condition for a journalist turned writer.  The depression is here and I can't seem to wrap my mind around what not only this doctor but another doctor I trust implicitly said (same thing: I'm declining).  I go to get a wheelchair tomorrow if I didn't overdo it today, and I'm trying to get a piano so I can maintain my mind-hand coordination (otherwise I'll have to stick to PlayStation2 for coordination).  My family, other than my father, is completely non-supportive, pretending I don't have RSD, and many of my friends are saying, "Well, you're just getting worse."  One took the tact of pointing out all of the things I'm not going to be able to accomplish.  I feel as though I haven't accomplished anything, and now I only have five or ten more years (according to the doctors) to do anything.  I knew from my pharmacist father and my biochemist brother that because this affects the sympathetic nerve system, I would eventually not be able to perform actions such as breathing and blinking.  Anybody got any ideas about prognosis?  My father and my doctor in L.A. have done a lot of research on this, so I don't think they're out in left field; and at least they understand that few diseases illustrate the mind-body connection like RSD.  (In other words, stress equals pain.)  Thanks for letting me vent.  I'd like to hear from anyone.  Take care, all.