Increasingly Difficult to Accept Peripheral Neuropathy

I agree. I can’t think of anything but the pain and how I can’t walk. Pins and needles all the time from my lower back to the toes of my feet. Cymbalta , Gabapentin, Lyrica doesn’t work. My GERD is horrible and I’m on Quetiapine to help me sleep does anyone know about Quetiapine? Is it bad for GERD. I’m starting to have facial motions I can’t stop.

I too suspect that one of my sons is developing SFN. One of my sisters has it, but we did not develop symptoms until our 50’s. I’m sure that my Tegretol (for complex partial seizures) masked my symptoms for 25 years, until I stopped taking it in 2014.
I live near a Clinic for Genomic Research, and they were excited to hear my story and do genomic testing. Frustrated that they didn’t find any genetic variants YET. The lab still has my results, and they assured me that I could hope to one day get a phone call, as they discover more and variants. I feel like someone would be excited to test you and your sons (if they haven’t already). I visit UAB, and we are all pleased and amazed that resuming Tegretol has changed my life - literally. Probably because it works with the unknown variant that I have. Sure, my life is not anywhere near normal, and I am now on disability - but I’m interested in experimenting with my doctors.
Sending hope your way -

Thanks for the reply. I'm doing a virtual visit with my neurologist this Friday and was planning to discuss Tegretrol with her. For whatever reason, it has a reputation of helping more genetic neuropathies than other types, so I'm hoping that she will write me an Rx. Just out of curiosity, why did you stop taking the Tegretol in 2014? Side effects?

I too suffered with depression, anxiety, panic attacks because I lost my job due to the Peripheral Neuropathy in my feet but back then I didn’t know, that’s what it was. I managed to dig myself out of that dark hole and kept fighting to get back out in the real world. I am happy to report that I have a full time job and just bought a house last year and am engaged to an amazing man but…my PN has gotten so much worse. I’ve actually had to take yesterday and today off work because I can’t walk. I am on Lyrica, Gabapentin, T1s and vitamins. I do my stretching, wear my custom orthotics and compression socks. I don’t know what else I can do. I’m scared of losing my job because of my PN, I don’t want to end up back in that dark hole again. Any help/suggestions would be appreciated.
Just know you are not alone. Take Care,
Kristin

As I mentioned before, the acceptance of this is very difficult. The medical community is unable to give many of us a reason for our PN. To me, the important thing is what to do now. It sounds like you are improving and concentrate on the positive aspects of what you are able to do. I have found it helpful to plan ahead within your abilities. We might go to Disney World in March. I will have trouble walking that place. I too wear orthotics. So, our plan is for me to rent a scooter when needed. Remain positive, do what you can, and I wish you the best.

sorry about your pain. Hope you find something, anything. I pray for you.

Thank you. After a night and morning of off the charts pain. I welcome death. It’s not that I don’t love life, but this is not living.

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In 2014, I was 54, and had been taking Tegretol for complex partial seizures that started around age 21. At this point, I hadn’t had a seizure in many years. My neurologist had retired, and my GP was writing the Rx. I was just curious about whether I still needed it. As a nurse, I knew how to safely wean off of it. I’ve never had another seizure.
I like digging through research articles, and that’s how I put together the puzzle pieces on Tegretol. This inspires me to search again for the article that mentioned it. Again, I’m really amazed at the effect on most of my SFN pain, palpitations, sweating. Life is far from perfect - I can tell that my neuropathy is continuing to progress. But that burning pain in my toes and fingers, that had me is such despair, is gone. My skin is still overtly sensitive to minor bumps and pressure, but nothing like it was before.
Good luck!

Read about voltage gated sodium channels (VGSC), if you like doing research.

Sorry, I’m working on my IPad, so copy and paste is awkward. This is an example of a research article mentioning Tegretol (carbamapezine). I’m sure there are many more articles. I had genetic testing, and it did not find one of these known variants, but since my sister has the same symptoms, I’m sure one will be found eventually. Happy to serve as a test subject for Tegretol in the meantime! It’s really a fascinating case study.