Neuropathy: What works and what are scams?

Posted by bigjohnscho @bigjohnscho, May 2 6:09am

I am new to this forum although I have been suffering with peripheral neuropathy for 2 years (none diabetic). Like most sufferers I have searched endlessly to find supplements that provide some relief and a possible cure. My search has proved how impossible this quest is and so expensive due to misleading adverts and down right scams.
What would be really helpful if members posted their experiences with supplements they’ve tried , which were useless/helpful or obvious scams. I am sure there must be some helpful supplements out there and we would all benefit if these were posted on this forum.

Interested in more discussions like this? Go to the Neuropathy Support Group.

Some time ago, I saw an ad for "diabetic socks". Since neuropathy often follows diabetes and since they are inexpensive, I ordered set from Amazon. After using them for awhile, including going to bed with them on, I have ordered two more sets. I have found they have a helpful amount of compression . Good luck.

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@davidhpress

I have been dealing with non-diabetic neuropathy for 20 years. In the last 4 years or so, I’ve pretty aggressively tried many supplements and prescription drugs.

My results:

Lyrica helps more than anything else. Benfotiamine helps some and Alpha-Lipoic 700 mg from Nuturna (not cheap so I switched to Benfotiamine, one of its main ingredients) has been very helpful.

Lion’s Mane did nothing, acetyl l-carnitine did nothing, NAC did nothing.

The above were all recommended by people, all were mentioned on this forum.

That said, some things work for some people and not for others.

Non-drug therapy:

I have begun spinal decompression therapy with my chiropractor. It is not at all painful and after the first 2 weeks with 5 visits a week, my lower legs have feeling, I can step into a shower and feel the temperature on my feet for the first time in 20 years and I have feeling in the bottom of my feet for the first time in 20 years. Some foot tingling is still there which I hope will go away with continued decompression. I began the decompression not knowing if insurance would pay any of it but it has become clear that it is something that works extremely well for me and may help me stop my drug therapy. This doesn’t mean that it will work for you or work this quickly. My chiropractor tells me that what has changed for me in two weeks usually takes about a year. I’m extremely happy with how things are progressing and will stick with it to try to eliminate all tingling. To be continued.

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Nice to hear something is working. Can you describe decompression treatment? What’s involved with this approach. Would love to know more. I have complete idiopathic PN. Tried everything. Been tested for everything I know about. Seems like trying something else is worth it but lots of snake oil out there. Appreciate any color. Thank you

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@bigjohnscho

My GP has taken me off statins due to my peripheral neuropathy. I am waiting to see what alternative he offers. Has anyone experienced this

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What do statins do to peripheral neuropathy?

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@skipneuroathy

Some time ago, I saw an ad for "diabetic socks". Since neuropathy often follows diabetes and since they are inexpensive, I ordered set from Amazon. After using them for awhile, including going to bed with them on, I have ordered two more sets. I have found they have a helpful amount of compression . Good luck.

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Great suggestion! Thank you! I just got bloodwork back and was really fearing diabetes was a possibility. Thankfully, it came back negative. Looking in different directions for this painful neuropathy. My blood work did show another potential culprit… B6 plasma is high. Never heard of that one! Really hoping for help with this. Thanks again, Skip!

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Statins are one of the major causes of peripheral neuropathy

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@carolinlv

What do statins do to peripheral neuropathy?

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Get off the statins as fast as you can!! That is nasty stuff and causes so many harmful things to your body!
Statins may bring on myotoxicity by interacting with your muscle cell components, such as mitochondria, as well as by triggering an inflammatory response due to the drugs’ effects on your muscle antigens. A 2020 study also suggests that statins may lead to myotoxicity by affecting your electrolytes, oxygen supply, or other factors affecting your muscle health.
Be careful!!

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@thelmathomas76

Get off the statins as fast as you can!! That is nasty stuff and causes so many harmful things to your body!
Statins may bring on myotoxicity by interacting with your muscle cell components, such as mitochondria, as well as by triggering an inflammatory response due to the drugs’ effects on your muscle antigens. A 2020 study also suggests that statins may lead to myotoxicity by affecting your electrolytes, oxygen supply, or other factors affecting your muscle health.
Be careful!!

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The inflammatory issue is especially interesting. I also tested positive for autoimmune. Wonder if they could have contributed to that??

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I have been suffering from neuropathy from unknown cause for almost 3 years. And yes I think I have tried almost all of the snake oil salesmen cures.
So far I don’t know of anything that has really helped my pain.
I take Gabapentin and hydrocodeine for my pain. Best I’ve found.
Been on the doctor merry-go-road so long. Think I’ve tried them all. Been to chiropractors, acupuncture docs, 3 different neurologists, on my 3rd pain management doctor with no relief.

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@bwillob54

I have been suffering from neuropathy from unknown cause for almost 3 years. And yes I think I have tried almost all of the snake oil salesmen cures.
So far I don’t know of anything that has really helped my pain.
I take Gabapentin and hydrocodeine for my pain. Best I’ve found.
Been on the doctor merry-go-road so long. Think I’ve tried them all. Been to chiropractors, acupuncture docs, 3 different neurologists, on my 3rd pain management doctor with no relief.

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Hi bwllob54,
Thank you for your history. I 'm certain you could go into more detail.
I have peripheral neuropathy (PN). I am now at 2700mg of Gabapentin. It helps a lot. I don't know about hydrocodeine.
I find it very curious that there are so many instigators that cause PN which is the disintegration of the coating around the nerves.
Cheers,
Jill

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@rybren

Nice to hear something is working. Can you describe decompression treatment? What’s involved with this approach. Would love to know more. I have complete idiopathic PN. Tried everything. Been tested for everything I know about. Seems like trying something else is worth it but lots of snake oil out there. Appreciate any color. Thank you

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I do not know to describe a compression treatment, but all I know is putting on the socks lessons my feet pain so that often it will let me sleep. Also, when I awaken at night and find it hard to go back to sleep, I take off the socks and that helps.

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