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I am desperately hoping to get help for, not pe
I do not have peripheral neuropathy. I have length dependent, sensory motor, axonal, chronic polyneuopathy. The pain started in my left foot and is now in my right foot. I have been to several doctors only to hear “there’s not much you can do with neuropathy “. The last doctor was a Neurologist at University of Alabama. She did skin biopsy and needle .
She told me the diagnosis and that there is no treatment. The pain is intolerable. Support socks, shoes, Lidocaine patches, Tylenol, Ibuprofen, Lyrica, Cymbalta, Epson Salt soaks are not helping. The only time I have relief is in bed, with feet elevated. HELP PLEASE I am not ready to live in bed.
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Hello @loa80, Welcome to Connect. I'm not a medical expert but I think maybe your neurologist meant there's no cure and not no treatment. Sounds like you are already on a treatment with medications but they just aren't providing you with any relief from the pain. You are not alone and that is why a lot of us came to Connect to learn what others have shared. The best advice I have is to learn as much as you can about your condition and what treatments are available that might provide some relief as no one treatment works for everyone (my observation). The Foundation for Peripheral Neuropathy has a list of treatments and therapies that you may want to scan through while you wait for other members to respond - https://www.foundationforpn.org/therapies/.
You mentioned the University of Alabama. Have you heard of or considered the Pain Management Clinic at UAB? I haven't been able to find any posts discussing the UAB facility but I did find a YouTube video from 2016 that gives an overview of the program that may be helpful until someone can share their experience with you.
Lyrica is my only prescribed medication for polyneuropathy that extends all the way to thighs and in wrists/hands. Lyrica works wonders but hit painful troughs for more than 2 hours after 6 hours of relief. (Quit tramadol after severe mental dulling). All my doctors agreed that micro dose THC was the way to go. I am trying with legal hemp derived THC. Will meet with Pain Management center very soon. I had rebound pain when I used warming or cooling balms. CBD with essential oils helps me greatly with the burning pain at skin level, Good luck.
Length dependent, sensory motor, axonal, chronic polyneuopathy is a form of peripheral neuropathy. Have you looked into FDA approved Qutenza for your PN pain issue? Scrambler therapy? Both have been demonstrated effective in those with painful PN, though, of course, they don't work for everybody. I am making no recommendation as to clinics/clinicians, but both therapies are available at various locations in the USA, as well as Europe. It is important for people to do their own research and review the relevant data on their own. Good luck.