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New member
Jul 12, 2016
My doctor in 2012 diagnosed me with FMS, but I disbelieved her, buying into the "we'll say that when we can't figure out what's wrong with you" myth. And I lived the next four years as if I were a well person and nearly burned out completely. A new doctor diagnosed me with FMS again and told me it was time to face it so I can deal with it, because continuing to ignore it is going to get me permanently debilitated.

I've lost my job due to my inability to work (a reactivation of EBV caused a major flare that I haven't been able to get out of fully for five months, now), and I am attempting to file for SSDI.

I have all kinds of symptoms that they can find no concrete or serological evidence for, which is making me feel like a fraud.

I have a couple of friends with similar diagnoses, but they mostly seem to be functioning all right. I end up feeling like a wimp far too often, and kicking myself into speedy productivity mode, and ending up flaring again. I'm sure I'll find my own equilibrium at some point, now that I've faced the diagnosis instead of trying to run away from it -- but until then, does anyone have any handy tips for what stops you feeling like you're crazy or criminal trying to prove how sick you are?

There are so many "moving parts" to this disease that it's more than a full time job just to keep tabs on them. Food, diet, eating carefully, preparing meals at home, buying ingredients from special stores, supplements, exercise, enough sleep, minimize stress, rest, exercise, soak in hot tubs or bath tubs, get massages from a myofascial expert.... There's no way I have time and money for all of this. Everything is a baby step, and I'm working on being patient with it, but there are days I wish they'd find something and say, "Oh! Here's the thing that's bothering you. We'll just remove it. Okay, all better now!"

Anyway, I'm glad to have found this group!

FMS - diag 6/2012, diag again 2/2016
Delta-Wave Sleep Disorder [Stage 3/4=0%) - diag 6/2012
EBV - mono/jaundice 1/1992, reactivations every few years or so
CFS - diag 6/1992
OsteoArthritis - diag 2/2016
Seborrheic Dermatitis - diag 6/2015
Interstitial Cystitis - diag 2010
IBS - diag 2010
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