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.

@winkman1

I wear the Futuru brabdc 20-30cm -CVS and Amazon -
but I still numbness in both feet.

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Hello @winkman1, Welcome to Connect. I also have neuropathy without pain but I do have the numbness. I also wear compression socks (20-20 mmhg) but I wear them for another condition, lymphedema and they do nothing for numbness. They are strictly for controlling the swelling.

I haven't found anything that does much to help neuropathy numbness but I keep searching. Do you have pain with your neuropathy?

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@johnbishop

Hello @winkman1, Welcome to Connect. I also have neuropathy without pain but I do have the numbness. I also wear compression socks (20-20 mmhg) but I wear them for another condition, lymphedema and they do nothing for numbness. They are strictly for controlling the swelling.

I haven't found anything that does much to help neuropathy numbness but I keep searching. Do you have pain with your neuropathy?

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Mostly swelling- Lyrica is marginally useful Feet feel like wood and toes are really hard to curl up

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@winkman1

Mostly swelling- Lyrica is marginally useful Feet feel like wood and toes are really hard to curl up

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Another good source for complementary and alternative treatments for neuropathy is the Foundation for Peripheral Neuropathy - https://www.foundationforpn.org/wp-content/uploads/2020/08/Complementary-and-Alternative-Treatments-Revised-2020-final.-1.pdf

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@jakedduck1

@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

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I know this is off-topic, but I never understood the phrase "IF IT SOUNDS TOO GOOD TO BE TRUE, IT PROBABLY IS" ..... "probably is what, true? Too good?

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@fatalfflaw

I know this is off-topic, but I never understood the phrase "IF IT SOUNDS TOO GOOD TO BE TRUE, IT PROBABLY IS" ..... "probably is what, true? Too good?

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Welcome @fatalfflaw, Don't you just love those play on words sayings. To me "If it sounds to good to be true, it probably is..." means it is more than likely a fake advertisement and not worth the money to give it a try. All this coming from someone who has spent a lot of money on bogus health products.

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@johnbishop

Welcome @fatalfflaw, Don't you just love those play on words sayings. To me "If it sounds to good to be true, it probably is..." means it is more than likely a fake advertisement and not worth the money to give it a try. All this coming from someone who has spent a lot of money on bogus health products.

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I hear ya brother! I don't want to tally the $ I've spent on podiatrists, orthopods, orthotics, shoes, various gizmos supplements and voodoo. Yet i keep trying.
I have a bottle of Nuphoria coming soon, the ASO Ankle Stabilizers that I recently tried seem to be , in my case, a valid piece of kit. I'm thinking that faulty biomechanics and instability provoke further inflammation that surely doesn't help!

I also ordered a TENS/EMS unit after experiencing a short session with one that I picked up from Walmart on a whim. It felt positive but was unfortunately defective.

Anyway, the phrase in question strikes me as similar to " I could care less" ....which means that the speaker cares at least somewhat!
Good luck to us all.

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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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@fatalfflaw

I hear ya brother! I don't want to tally the $ I've spent on podiatrists, orthopods, orthotics, shoes, various gizmos supplements and voodoo. Yet i keep trying.
I have a bottle of Nuphoria coming soon, the ASO Ankle Stabilizers that I recently tried seem to be , in my case, a valid piece of kit. I'm thinking that faulty biomechanics and instability provoke further inflammation that surely doesn't help!

I also ordered a TENS/EMS unit after experiencing a short session with one that I picked up from Walmart on a whim. It felt positive but was unfortunately defective.

Anyway, the phrase in question strikes me as similar to " I could care less" ....which means that the speaker cares at least somewhat!
Good luck to us all.

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I always correct my children to say “I could not care less” because I think that’s what they really mean to say. “I could care less” still indicates a modicum of concern, which is usually not in the case. It’s another statement people frequently make without actually analyzing what’s coming out of their mouth.

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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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What dose Benfotiamine do you take

John

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300mg twice a day

I started with half of that and worked my dose up consulting with my neurologist.

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