Meralgia Paresthetica

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.

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.

I’ve been diagnosed with trigeminal neuropathy, the most painful experience I’ve ever had. Came on suddenly. Anyone else?

Do statins increase pain of neuropathy?

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.

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.

Hello @libbiehyman and welcome to Mayo Clinic Connect. I can understand your concern, especially not being able to get a diagnosis to be sure of what it is you're experiencing.

You will notice that I have moved your post into an existing discussion on Meralgia Paresthetica that you may be interested in. You can find your post here:
- Meralgia Paresthetica: https://connect.mayoclinic.org/discussion/meralgia-paresthetica/

Here is some additional information that you may find helpful:
- Meralgia paresthetica: https://www.mayoclinic.org/diseases-conditions/meralgia-paresthetica/symptoms-causes/syc-20355635

I want to connect you with members such as @aaroncush @steeldove @lotsofpain @ellenos who have experience with meralgia paresthetica and can offer guidance and share what helped them, in case this turns out to be the case for you as well.

When you read through the symptoms in the last link, does this align with what you have been going through?

My primary care diagnosed me with meralgia paresthetica - at first it was extremely painful. I was told to make an appt with an orthopedic doctor since my xrays also showed hip arthritis. Because I was in so much pain and could not get an appt for weeks, I decided to try a chiropractor. Research on the web showed that neuro chiropractors were successful at treating this. I found one (specializes in treating nerve pain) and went last week. She used ultrasound and that night I had my first sleep without pain. Since then I have mild pain off and on, she said it would take a few visits. You definitely want to get a medical diagnosis of course, but its something to consider to help with the pain.