Originally Posted by heb1212

Sorry, no insightful thoughts... just comments for the sake of commiserating! I had extreme muscle weakness when my nerve pain first engulfed me years ago, especially leg/thigh weakness. Climbing stairs was the first indication there was a problem. I couldn't even stand to wait for an elevator without looking for somewhere to sit down. It's gotten somewhat better, though I have muscle pain pretty much everywhere and my legs get shaky if I have to stand too long. Given I have both nerve pain/paresthesias and muscle pain, there was the suggestion of fibromyagia, though I have been evaluated twice now and demonstrate no tender points when examined. It's just deep muscle pain and burning everywhere. Do you have it inside your mouth, throat, ears, etc.? Just a nightmare.
Since my nerve biopsies show nerve densities within normal range (though I have the swellings) I haven't been officially diagnosed as having neuropathy. Good thing, right? But there has been the suggestion of a "central sensitization" maybe triggered from chronic peripheral nerve pain that perhaps is caused by a chronic virus, as I continue to test positive for it. Bad thing, right? As parvo virus b19 is medically documented to be a trigger for certain auto-immune conditions, I do wonder if something like that will eventually surface.
I think I can speak for so may of us here who feel that if we only knew what it was that was raging through our bodies, we could perhaps deal with it a little better. I find myself looking behind every tree and under every rock because being in this much pain and feeling this ill just can't be idiopathic. But, so far literally hundreds of vials of blood and numerous diagnostic procedures have only turned up the parvo virus dna; some perivascular inflammatory infiltrates; and small to medium sized axonal swellings... nothing to stitch together a firm diagnosis and corresponding treatment.
Hopeful, what symptomatic treatment/RXs are you taking? What has been your experience with them? Any input is appreciated as I'm facing the fact I may have to ask for bigger guns than the Gabapentin/Nortriptyline.
FYI.. just yesterday at the grogery store I saw a bumper sticker that said, "Choose Hope." I thought of you and me, really. God speaks through strangers sometimes and draws other strangers together for comfort on a web site. I hope "Liftyourhands" is checking in, too.
God's comfort and blessings to you.