Greetings, friends:

I have a bizarre kind of neuropathy that has made both my neurologist and my pain doc shrug their shoulders. The backs of my thighs sting and burn (think very bad sunburn), but only when that skin stretches (like bending over), sitting down, or, especially, standing up from a chair. It ebbs over about 60 seconds, but I stand up wincing and have to stand still, or kind of stagger-walk until the pain subsides. I had an EMG and was diagnosed with DISTAL limb neuropathy (this is proximal). I had an MRI of the spine and there are some indications that my lumbar spine might be involved, but I thought the changes were consistent with a 62-year-old spine. GABA, pregabalin, and PT have not helped. I'm still on 400 mg pregabalin every day because I'm afraid if I stop taking it, it'll get worse. This started many years ago with temperature sensitivity--suddenly I could no longer take hot baths, the backs of my thighs would start burning intolerably. NO ONE can figure this out. I was also just diagnosed with severe osteoporosis (didn't see that one coming) after suspiciously low (practically nonexistent) vitamin D and suspiciously high PTH levels. That's being managed, and I don't see how they can be related, although vit D does have effects on the nervous system.

It's just so wacky, such weirdly SPECIFIC neuropathy. I was wondering if anyone else had this bizarre kind of neuropathy, and what you've done to manage it? Thank you for your ears, my friends, and here's wishing for better-behaved peripheral nervous systems for us all.