Small Fiber Neuropathy

Diagnosed with SFN 3 years ago. I’m not diabetic. I’m considered idiopathic. Pain is either extreme cold or heat. Walking feels like I’m barefoot on a gravel road!!!! Legs ache constantly like I ran a marathon. I’ve tried everything, from various meds to acupuncture. Nothing really helps. It’s an extremely frustrating disease that seemingly has stumped every neurologist I’ve seen. I’m seeing my last neurologist in January at Mass General Hospital in Boston. She has made SFN her sole specialty. If she can’t help, I’m lost. I’ll live my remaining days in constant pain.
I hate opioids, but they’re the only medication that gets me through the day sometimes. I take them sparingly as I know the addiction issues. But really, what is one to do?
If something comes of this visit, I’ll get it out on this platform. I was very active not too long ago. Very athletic. Skiing, hiking, tennis. Hitting the gym 4 to 5 times a week. That’s all gone!!! Very depressing. But I just can’t give up!!!!

Wow, I could have written parts of your comments. I am 63. The realization comes in increments, doesn’t it? I tried something different yesterday. I walked a 1.5 mile easy trail but I used two trekking poles. And a friend joined me, which distracted me. I had to sit down once, and my face and hair were drenched with sweat ( another SFN symptom). But I made it! I can’t say it was pleasant, but I would much rather be outside than swimming laps indoors, which is my only other form of exercise now. The trekking poles helped tremendously.

I am sorry about this - I have read a Psyiatrist is an MD who works with people with neuropathy and arthritis. They do PT- Massage- cold therapy- and acupuncture. Perhaps try this? Best wishes

Sheila

Thanks, but for starters this article was in 2002. Second, in the first paragraph "There is no treatment to reverse the neurologic deficit of this disease manifestation....." I've tried several light therapies. All have failed. At this point I'm just looking to decrease the daily pain, even partially. When the pain flares up during the day, what do I do??? Neuropathy Meds don't work. Pain meds don't work. Until the nerve pain calms down by itself, I am not a happy camper. To me it's all about the PAIN. What to do when the nerve pain flares up.

I’m not that young. I’m 64. Pain started in my mid 50’s. Misdiagnosed and went through 3 different surgeries. It took my 3rd neurologist to properly diagnose it was SFN. But he seemed somewhat surprised it came back positive. After that he seemed at a loss on how to treat it. Just more pills!! I’ve missed out on so many things I wanted to do in retirement. The SFN forced me into an earlier retirement than I planned on. It was a physical job I had been doing over 30 years!!!! Just couldn’t do it anymore. But I also can’t do the activities I so looked forward to doing in retirement. I now live a sedentary lifestyle that was never me!!!! I can’t even dance with my wife!!
So frustrating. So depressing. Hoping for a miracle. But I’ve become quite skeptical. Unfortunately!!!!

Has anyone tried compounded drugs for foot pain with several meds included? Also, I have tried voltarin gel 1 percent. Can't take anymore drugs! I'm maxed out. It's helped somewhat with foot pain! Maria.

Thanks for sharing this. My sole of my feet are now hot or freezing. It varies all during the day. I also am Turing purple and red and have a few sores forming one is just a white spot. Now using a light weigh Walker when legs are very weak. Difficult to mentally except this new me.

Hi, Maria

What sort of foot pain? Can you be more specific? Is your pain definitely linked to your neuropathy? I have foot pain, but it's not part of my PN (according to my podiatrist). My left ankle is riddled with arthritis, and both feet have severely fallen arches. I wear orthotics for the fallen arches (which help, but they're no cure). For my arthritic ankle, I have a Velcro brace that I'll wear when the pain gets to be too much; otherwise, I do daily ankle limbering exercises. But more to your point: I will occasionally use Diclofenac gel. You probably know: Diclofenac is like Voltarin. I use it only sparingly, because, like you, I've too many medications. Have you been to a podiatrist? If your pain is part of your neuropathy, that would be one thing. If it's not, then maybe a podiatrist could suggest something that would give you relief – without adding another medication!

Ray (@ray666)