I am desperately hoping to get help for, not pe

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.

@proteusx No. I have not tried Qutenza—my PN goes from toes to top of leg and forearms to fingers so topical patches would not help. I have tried capsaicin, and eucalyptus balms—they irritated more than helped. For me, gentler topical balms help much more. I settled on a CBD balms—which were discontinued when customers wanted the hemp THC d9 and d8. Now i make my own—better version. I am glad localized treatment works for you.

There is no cure for neuropathy, so they can only treat it's symptoms, pain, numbness, and burning. Some things can help to a certain extent, but the pain is always there, at least in my case. I've been taking the maximum dose of 3600mg of Gabapentin every day for about 4 years now, along with 1200mg of alpha lipoic acid as recommended by my doctor. I take several supplements as well, a multi vitamin, a B vitamin complex, fish oil, glucosamine, calcium/D3, and a lactose support supplement. This is in addition to the 9 prescription drugs that I'm on, which means that I have to swallow almost 40 pills every single day. You do what you have to do to have any kind of a quality of life in our declining years.

@dckuke Some studies showed some systemic effect from Qutenza, but that may be in exceptional cases. It is formulated so that even though much stronger than over-the-counter capsaicin ointments it is actually considerably less irritating in most cases as well as far more effective. Additionally, it has to be used for at least a year to have significant effect. I hope the CBD balms continue to give you some benefit. Magnetic therapy is another possible option being used at VA hospitals, etc. Yet another is carboxytherapy and, eventually, I hope, topical pirenzepine, which may be approved in Europe, estimated 2028. Qutenza and pirenzepine are the only drugs that have so far shown any ability to have benefit with regard to the underlying causes of most peripheral neuropathies, whatever the etiology. Everything else merely addresses some symptoms and very imperfectly at that.

Have you tried alpha lipoic acid methylated B12 and B1 in combination?

@mrmacabre I don’t believe that big pharma want you to think that so they can make a boat load of money! There are treatments, one is a combination of alpha lipoic acid, methylated B12 and B1

@blowerk1216

No I have not, but will check it out. Thank you