Neuropathy: What works and what are scams?

@bigjohnscho
How many members on connect have you seen post a cure or even significant improvements?
But even if they did it doesn't guarantee you will receive the same results. Personally, I never bought into all the supplement, devices or clinic hype.
I also have epilepsy, neither neuropathy or epilepsy have a cure. I’ve acceped my diagnosis and there limitations and adjusted my lifestyle accordingly. I've had neuropathy for almost 40 years. As the condition progressed my pain eventually stopped, replaced by numbness and other complications. Looking back, the pain wasn't so bad after all.
Sadly many people choose to chase rainbows and end up disappointed and perpetuating the booming fraud market, making crooks richer.
Epilepsy medication has proven to be the most helpful. I have taken these horrible meds for nearly 60 years and none have helped my neuropathy and for 45 years didn't help my seizures either. However, my brother takes 3600 mg of gabapentin and it helps him some.
ALA as I understand it is more likely to help people with diabetic neuropathy. Supposedly it has something to do with insulin but ALA studies for other sufferers has shown little to no effect. Although, ALA given intravenously has a higher success rate.
If you choose to to shop on Amazon for a cure, think about this.
Research showed that in March 2019, there were 1.8 million new unverified reviews, with an average of 99.6% of them being 5-star reviews. Most of these reviews are from people paid to write them.
I hope you don't go broke searching for the elusive cure researchers all over the world have yet to find.
If start supplements, Id ask my doctor and pharmacist about them first.
You might want to check out The Peripheral Neuropathy site for potential treatment possibilities.
https://www.foundationforpn.org/
IF IT SOUNDS TOO GOOD TO BE TRUE, IT PROBABLY IS.

Jake

My neuropathy is weird because I suffered nerve damage both from from the cancer lesion on my thoracic spine and from the emergency surgery to debulk it.

I was on Lyrica (Pregabalin) for a couple of years — which did make a big difference when we finally got the dose right — but then I decided, in consultation with my medical team, to titrate off it because I already had weight gain as a side-effect of my primary cancer meds, and I didn't want to compound that with Pregabalin and end up dealing with type 2 diabetes as well. It took three tries over more than a year.

Now, my body and brain have learned to ignore or block enough of the nerve pain that I can just live with the rest. When it flares up I take a Tylenol — Ibuprofin is contra-indicated with my main meds — but I try not to do that too often, because it seems to become less effective the more often I take it. Staying active also seems to help (the pain, of course, says "Stop!", but if you can move through that, it seems to diminish a bit).

Jake - You hit the nail on the head! Your point to talk with doctor and pharmacist is absolutely necessary to make sure any new supplements do not interfere with effectiveness of on-going meds. Ed

Surely some people have found something that has helped with this awful disease. It would be so encouraging to here from anyone who could offer hope. It would even help to hear about those who have tried so called cures that have failed, at least that would warn others not to waste their money. I for one cannot just give in.

Hi...I've had (non) diabetic neuropathy for 4 years now. I've seen multiple neurologists and have had a spinal stimulator implant done. That does help a little, but the only thing that keeps me going at all is taking 4 Oxcarbezapine a day and 2 Pregabulin at night.
Nonstop medication, but what else can I do? I endure.
God Bless!!

The ONLY way I can exist is taking 4 Oxcarbezeprine a day and 2 Pregabulin at night! I've also had a spinal stimulator implant done...it helps a little.
Ive found nothing else at all yet.
God Bless!

I think the biggest problem is neuropathy is a symptom of something else and not a disease in and of itself. What works for one person won’t necessarily work for another. My symptoms are caused by inflammation and I seme-successfully controlled the pain with supplements that targeted inflammation, then when that was no longer enough added LDN to the supplements and got another 10 months. Now that combination is not enough (either my body has grown a tolerance to what I am taking or it is progressing) and I am back at the search for relief.

So if you want to try something, ask your doctor about LDN - it worked wonders for me for about a year, and did nothing for my father with type-2 diabetic neuropathy, so your mileage may vary.

Thanks for that, God Bless.

I tried just about everything for my feet. The only thing that worked for me was a pair of open toe compression socks. After about a week my symptoms were gone.

Funny you mention compression socks. Something that made a big difference for me when neuropathy was slowing my recovery from a serious spinal injury was getting proper orthotics (aka arch supports) in my shoes. I was getting serious pain with each step as I transitioned from wheelchair to walker to cane, but it went away in a couple of weeks after I started with the orthotics.

Note that I'm talking about real, custom orthotics that need a doctor's prescription and cost hundreds of dollars, not the cheap Dr Scholl's stuff in the pharmacy.

I also started wearing prescription compression stockings, but they didn't make nearly so dramatic a difference in my case (they helped more with the slight ankle swelling from the blood thinners I take to control my DVT).

For my hands, I found that squeezing one of those spring exercise things every morning eventually made the pain in my fingers, hands, and wrists go mostly away. If that's too much, even a foam stress-ball might help.