Quote:
Originally Posted by heb1212
Thanks, Susanne, for your experience and opinion. I particularly wonder about your pundendal nerve flares you mentioned. Are they episodic? I know this is what I'm experiencing; deep aching and burning pain in all my most private parts, groin and down my thighs. This in addition to every other fiber of my being. It was hideous last fall, seemed to improve over several months (never completely gone) and then a couple weeks ago is hideous again. Like another poster recently said, I literally have felt it move into regions of my body that I couldn't have dreamed of. I have a very hard time articulating this to the doctors. I know they're professionals but it's just so humiliating to be reduced to this. I so wished the patch had worked for me. I'm open to trying drug I never would have imagined.
|
It is really hard to describe, honestly when I try my doctor just cuts me off and writes the Valium prescription. He is at least as embarrassed as I am and that is saying a lot. We leave it at "muscle spasms" which it is. The worst pain is episodic, the burning waxes and wanes through the day but is a daily issue.
There is an Internet forum for pudendal neuralgia which offers better descriptions, yes the pain is horrible, impossible to sit still, just pacing. I have tried hot baths as well as ice, but the Valium helps most, sometimes it takes two of the 5 mg. but it works pretty quickly.
Sitting on hard chairs for too long and too much time in the bathroom seems to trigger the sharp shooting pain.
i think it is a poorly understood condition but it makes sense that as the neuropathy moves up into hips and waist area that it would affect EVERYTHING. My skin biopsy six years ago showed the nerve fibers gone at knee level and breaking down at hip level. I have burning around my waist and ribs now too.
I completely understand how awful this is.