Just Diagnosed with Small Fiber Neuropathy

...how long ago did you detect symptoms?

Just over two years ago it started and progressed from there. It took that long to be diagnosed.

If you don’t have pain you are extremely fortunate it. I am in pain everyday. Most of the time it’s intense burning pain but sometimes it debilitating pain. It took me years to finally e diagnosed. I have autonomic small fiber neuropathy.

I have had PN for 25-30 years and at first it was just tingling in my hands and feet, so I did nothing. It has slowly progressed until I have no feeling in my hands and feet (except for the constant pain in one foot), balance issues, can't drive a vehicle and am very reliant on my wife. I tried numerous prescription drugs for the pain and to sleep at night. Finally ended up with lyrica (3 times a day) and clonazepam before bedtime. I still have pain, but I can sleep at night.

Hello @preknight, Welcome to Connect. I'm happy to hear even though you still have some pain with your neuropathy you are able to sleep at night. I think that's a big help getting you recharged for the next day. There are a couple of other discussions where members have shared their neuropathy stories and what they've tried and what has helped that you might want to read through.

-- Member Neuropathy Journey Stories: What's Yours?: https://connect.mayoclinic.org/discussion/member-neuoropathy-journey-stories-whats-yours/
-- Living with Neuropathy - Welcome to the group: https://connect.mayoclinic.org/discussion/living-with-neuropathy-welcome-to-the-group/

You might also find some of the complementary or integrative therapies listed on the Foundation for Peripheral Neuropathy's website helpful if you haven't tried them before -- https://www.foundationforpn.org/living-well/integrative-therapies/

Have you made any lifestyle changes like diet or exercise to help with some of your symptoms like balance?

I take the same except I take Gaberpentin instead of Lyrica. I take Klonopin before bed with 50mg of Trazadone.

Hi @nlangmack, I too have extreme hypersensitivity to clothing, temperatures, room air or anything that even touches my skin. It is very very frustrating and the only thing that helps me (almost a catch-22, honestly) is constant compression. Tubigrip has been the best so far personally, tho there are many options out there w/ many fabrics and compression levels based upon your individual needs. The second thing that's really helped me is kinesio tape (medium strength). Many days I am rolling up my sleeves or putting my arms where they are out of touch from anything. My inner elbows are SO sensitive that I cannot even rest them or touch anything. I even self-tattooed "Don't Touch" on my left arm to hinder others from casually grabbing. Pain management for me as well has been unsuccessful, and the pain continues to change/increase daily. I definitely can relate and sympathize with your frustrations...so so sorry you are suffering. I hope permanent relief comes your way soon. Keep your head up, and know you are not alone in this fight! Neuropathy is one of the ugliest invisible diseases there is!

I am another with hypersensitivity to light touch and wearing clothing. Most days I wear a bathrobe. Socks, bras, underpants anything with elastic brings pain. Its hard for people to understand. I found some relieve using r-alpha lipoic acid.

I understand. I have had the same issue. Started a few months ago. I’m avoiding gluten and alcohol completely. Taking more vitamins and Cymbalta. It is better.

Interesting Mayo study -

Burning and tingling in your feet? You may have small fiber neuropathy
https://www.sciencedaily.com/releases/2021/10/211027172626.htm