Does anyone treat their neuropathy without big pharma drugs?

Hello @annashby, Welcome to Connect. Sorry to hear you have joined the neuropathy club. An 80+ year old neurologist that I had an opportunity to listen to at a Minnesota Neuropathy Association meeting back in 2018 commented that if you live long enough you will develop neuropathy as nerves die like any other cells in the body. Mine started in my late 40s but I am fortunate that I just have the numbness and no pain. Before I was diagnosed in 2016 or so one of my PCPs had started me on gabapentin but it didn't help the numbness so I stopped taking it only to find out later from the neurologist that there aren't any drugs that help with the numbness. I shared my neuropathy journey along with other members in another discussion here - https://connect.mayoclinic.org/discussion/member-neuoropathy-journey-stories-whats-yours/.

Best suggestion I have is keep doing what you are doing with a healthy diet and exercise and learn as much as you can about your symptoms and what treatments are available that might help. A great site for learning more, including complementary and alternative treatments is the Foundation for Peripheral Neuropathy - https://www.foundationforpn.org/living-well/.

You might also want to scan through the different discussions in the Neuropathy Support Group to learn what others have shared helped them - https://connect.mayoclinic.org/group/neuropathy/. Connect has a really nice search function if you want to give it a spin. Here are the search results for "neuropathy what helps" - https://connect.mayoclinic.org/search/?search=neuropathy+what+helps

Have you done any research on complementary or alternative treatments?

How much Gabapentin are you taking daily? You're right, there aren't any cures for the numbness, and gabapentin can only dull the pain, which is also not curable.
I'm taking 3600 mg a day for the pain and numbness in my feet, and it's not working very well.

@annashby
If you have nerve pain, burning, pins and needles, etc., you can try alpha Lipoic acid, Acetyl l carnitine and magnesium supplements. They have helped me when my small fiber neuropathy was really bad in my feet. Also, capsaicin and lidocaine creams and patches can help with localized nerve pain. Compression socks can help some, too, if your neuropathy is in your feet/calves.

Chemotherapy caused neuropathy in my hands and feet, although it's been much less severe in the hands than the feet. I took part in a research project that involved exercising regularly to see if it improved the neuropathy. It might have. At the same time, I was determined to keep up my guitar playing, and did. My conclusion is that the more intensive hand exercise with the guitar is highly effective in reducing the numbness and discomfort. If it weren't so damned cold these days, I'd be going barefoot to maximize the exercise and stimulation of my feet.

I started taking Alpha Lipoic acid a few weeks ago after my GP recommended it, and I think it has helped a little. I tried taking magnesium a few years ago, and there wasn't any noticeable difference, so I stopped taking it.
I can't wear compression socks because they only make the pain in my feet even worse. I'm wearing diabetic socks and shoes now, they fit looser and don't put too much pressure on my feet. Either way, my feet don't like having anything on them any more.

In some ways, I’m surprised I only take Gabapentin. I was hit suddenly with severe PN, so hard I couldn’t walk for 6 months; the internal pain in my lower legs was awful, lower arms as well. Adding to that was the long lasting icy cold hands and feet where piling socks and gloves on added little comfort, alternating with periods of intense burning all over (without being able to sweat) that lying naked in front of fans couldn’t help. I was in constant misery 24 hours a day and could get little sleep for at least a month before a Neurologist put me on Gabapentin.

Gabapentin has helped the internal thermometer problems I’ve had by 90% and I am so pleased with that. I still get affected easily by external temperatures I can’t control, so I have to help myself when I can avoid it. I’ll leave a restaurant (or eat very quickly) if they keep air conditioning too low, and I don’t linger in frozen food sections in stores, and I always wear socks, have a jacket, and have gloves in my pocket. In summer heat, I stay under an umbrella for shade or get in the water. But I can live now without the 24/7 discomfort I was having before Gabapentin.

It’s the same with pain. It’s now very manageable as I keep the constant level of Gabapentin in me. I rarely even think about it now! If I miss a dose, 9 times out of 10 I start feeling that internal pain in my legs and I know it might take me a day to get everything back to even keel. One thing Gabapentin does NOT help me with is numbness and the feeling of tight nerves in my hands and feet, but they do not disrupt my daily activities like my other aggravating symptoms did.

I got for neuropathy from chemo. I do take tramadol but I'm not sure it does anything I just noticed when I don't take it it seems to get worse but when I can't sleep and my feet hurt me so much I bought these socks from Amazon that have packs in them that you freeze and I put the socks on my feet and it's so relieving and I finally go to sleep. I think unfortunate because when my feet hurt the worst it's when I'm in bed at night and that's all I can think about is that feeling in my feet but during the day I guess I'm just so busy I don't think about it so it doesn't bother me as much. I did try gabapentin but it makes my hands shake it jumps onto things on that I don't want it to jump on when I'm typing so I quit using it didn't seem much help anyway

I treat my SFN with diet, moderate exercise (as tolerated), and supplements. I get the most relief from eliminating the foods known to irritate nerves (gluten, dairy, sugar, caffeine, alcohol, brown rice) and taking supplements like (NAC, 5-HTP, Co-Q10, R-ALA, magnesium glycinate, Omega 3s) and natural herbal remedies that support and calm the central nervous system and help nerves recover (tinctures of milky oat, ashwagandha, ginkgo, gotu kola, hops, and California poppy). I also make a ginger and turmeric tonic for inflammation and nausea. I recently found out my B6 was high from just taking my multivitamin, so I quit taking the multi, and I don't eat anything fortified with B6 (energy drinks, dairy, fortified foods, etc.) Eliminating B6 made a huge difference!!! But be sure to have your levels checked because low B6 causes nerve issues as well. I also use Indica edibles at night for sleep and a homemade magnesium spray for my hands and feet when the pain and burning is too much. I do take a low dose of gabapentin at night as needed (100 to 200mg) when I am flared up. I will also be getting back on low-dose naltrexone when I get some other health things figured out.

@annashby You are getting lots of exercise and that IS one of the best things you can do for your overall health! I read all the summaries of the lastest studies and there is currently nothing better than exercise for many conditions. I would not take gabapentin or any of the other common drugs that are used for neuropathy UNLESS you are really suffereng from pain. These drugs have only a small effect on numbness or tingling. Most people find them to be not worth taking, including me. I have tried them all. But one thing I have learned in 16 years of reading about neuropathy is that everyone is different. I was on gabapentin for 6 months and for me it causes a fogged, slightly dizzy feeling. It was no fun stopping it but I got over that in just one day. I did not miss it. 300 mg of gabapentin will make you sleep all night but you will still feel foggy through the next morning.

Hi @annashby

xxx A GOOD AGO FOR YOU xxx
Your age looks great for you and your feeling, walking, and talking!

xxx GABAPENTIN xxx
And supposed you take GABAPENTIN to get rid of pain. For me, that med is 600MG 6 times a day by slipping/sliding is 3 times a day. It’s not pain; it’s for anti-seizure in my brain, instead.

xxx WHAS WAS ADDED YOUR PAIN MEDS xxx
That med started ‘round 1991 for pain then added this for anti-seizer people, in ‘round 2001.

xxx HOW ABIUT ME xxx
It never helped my pain. This was no pain - zero - after my TBI membership until last 3 years later, I fell down on my 2 rear-ends then started pain from my rear-ends to the bottom of my feet. Thankfully, I had a surgery for that crazy pain on my lower back. All pain is gone BUT I still use the same type of meds that you use BUT there’s different drugs in my brain.

Thx,
Greg D. @greg1956