1. < Neuropathy

Neuropathy: What works and what are scams?

Posted by bigjohnscho @bigjohnscho, May 2, 2024

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.

billl | @billl | Feb 6 8:33pm
In reply to @ashleymeade "If its out there I tried it. I have severe neuropathy from chemo drugs. Most things..." + (show)
@ashleymeade

If its out there I tried it. I have severe neuropathy from chemo drugs. Most things from accupuncture, chiro, herbals, lotions, etc... nothing relieved; however I am on Gabapentin and Duloxetine. I notice that if I miss a dose that pain is MUCH higher and if I take it before bed, I can actually sleep through the night.

Jump to this post

Have you tried Marjuana? I seem to get some relief from using it. If that interest you, let me know and I will tell you how it helps me.

REPLY
bigjohnscho | @bigjohnscho | Feb 7 11:54am

I have toyed with this for a long time but I take a lot of other medication. Sometimes I am still really tempted. I am very interested to hear from you.

REPLY
wynesshc | @wynesshc | Feb 7 12:41pm

Tried as many as I had access to, blue laser , acupuncture, creams etc...none with any effect...
Started out on heavy doses of gabapentin,,,,had some success for a year or two...pain was at a
5 out of 10...about ten years ago the gabapentin was not working,,,so went on pregabalin and hydromorph.
I take 100mg of pregabalin at noon and 9pm, and 6mg of slow release hydromorph at 7am and 7pm.
This has reduced all symptoms from a ten to a workable 2....so for the past ten years or so I have managed
to live with the neuropathy, knowing there is no cure,,,,just an attempt to manage this companion to the
best of our abilities.. Herbert C

REPLY
loriesco | @loriesco | Feb 8 9:33am

You would be served well by searching through the history of pages upon pages of people's comments of things they've tried. Having been here for 3/4 of a year now, I have read many conversations about nerve medicines, supplements (do work IF you have a deficiency), marijuana, opioids, MFR (there's a section here on that), getting the right diagnosis as a start (getting the wrong one too!); about doctors, EXERCISE (or not!), and scams. It is an individual path, depending on age, condition, access to medical care, medication reaction, and specific health needs. Most of us plug away for years, on these things, as we age. All these things, and MORE have been posted. Since you are new you maybe haven't had the opportunity to check out the extensive history of "sharing" going on here!
I have uncovered one amazing miracle - for myself - I have Osteo Arthritis for 30 years, bad, turns out my PAIN was from GOUT! learned that through this group and a supplement! I had high uric acid and the doctors never paid attention because X-rays should be for OA. I found out by trying a supplement. But I transitioned to the medicine where my Uric acid levels were better addressed.
The process of aging is a slow burn - literally, metaphorically, and that's a pun! Gotta keep our heads up and support each other when we get stuck. Good luck!

REPLY
chilko | @chilko | Feb 13 10:42pm
In reply to @inmagic "BIG RED FLAGS!!! • In general, these ingredients are helpful for neuropathy in the correct form,..." + (show)
@inmagic

BIG RED FLAGS!!!
• In general, these ingredients are helpful for neuropathy in the correct form, amount, and quality, but no 'one' supplement provides what we need.
• This company does not list the amount of each ingredient, which means it most likely has too much or too little. They use the wrong form of ALA, and they don't list the herbal extracts they use, which can be dangerous for some people.

I take all of these ingredients daily, but from quality medical-grade brands I trust, in the correct form and safe therapeutic amounts. I listed the recommended therapeutic dosages below, but always check with your doctor.

• Turmeric: I take this daily but make my own tonic from fresh turmeric.
• Root extracts: This is vague. I don't recommend taking unknown herbal extracts. They can interact with medication and exacerbate some medical conditions. I take ashwagandha and gotu kola root extracts for inflammation and nervous system health.
• ALA: this should be R-ALA, not ALA, 250 to 500mg 2x daily. (some people experience side effects from ALA, so use caution)
• CoQ10: 100 to 300mg daily.
• L-Carnitine: 1,000 to 3,000mg daily.
• Magnesium Glycinate: 320 to 500mg daily based on age and gender. I hope this answers some questions!

Jump to this post

I like your plan and will start to use it as soon as I get off my island and find a few of the ingredients I'm lacking...how much turmeric do you take?

REPLY
tonispears | @tonispears | Feb 15 2:21pm
In reply to @inmagic "BIG RED FLAGS!!! • In general, these ingredients are helpful for neuropathy in the correct form,..." + (show)
@inmagic

BIG RED FLAGS!!!
• In general, these ingredients are helpful for neuropathy in the correct form, amount, and quality, but no 'one' supplement provides what we need.
• This company does not list the amount of each ingredient, which means it most likely has too much or too little. They use the wrong form of ALA, and they don't list the herbal extracts they use, which can be dangerous for some people.

I take all of these ingredients daily, but from quality medical-grade brands I trust, in the correct form and safe therapeutic amounts. I listed the recommended therapeutic dosages below, but always check with your doctor.

• Turmeric: I take this daily but make my own tonic from fresh turmeric.
• Root extracts: This is vague. I don't recommend taking unknown herbal extracts. They can interact with medication and exacerbate some medical conditions. I take ashwagandha and gotu kola root extracts for inflammation and nervous system health.
• ALA: this should be R-ALA, not ALA, 250 to 500mg 2x daily. (some people experience side effects from ALA, so use caution)
• CoQ10: 100 to 300mg daily.
• L-Carnitine: 1,000 to 3,000mg daily.
• Magnesium Glycinate: 320 to 500mg daily based on age and gender. I hope this answers some questions!

Jump to this post

You did not mention if it works

REPLY
grubsnig24 | @grubsnig24 | 6 days ago
In reply to @aaroncush "I think the biggest problem is neuropathy is a symptom of something else and not a..." + (show)
@aaroncush

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.

Jump to this post

I have neuropathy for 3 years and the drug I use is GABAPENTIN and it always works after a couple of hours. I saw an add today on tv that claims fix my neuropathy. The name of it was NERVE ALIVE and it very expensive. What do know about that drug?

REPLY
1 reply
heisenberg34 | @heisenberg34 | 6 days ago
In reply to @grubsnig24 "I have neuropathy for 3 years and the drug I use is GABAPENTIN and it always..." + (show)
@grubsnig24

I have neuropathy for 3 years and the drug I use is GABAPENTIN and it always works after a couple of hours. I saw an add today on tv that claims fix my neuropathy. The name of it was NERVE ALIVE and it very expensive. What do know about that drug?

Jump to this post

Anything you see on TV that claims to fix your neuropathy is a scam. A fake, phony, and a fraud. Just do a google search for "reviews of Nerve alive". Look for independent reviewers. Sorry to burst this bubble. If these things really worked, they would not have to be advertised.

REPLY
joannehart | @joannehart | 6 days ago

Has anyone tried Nerve Freedom supplement. I couldn’t find out if it is a scam. It says it will cure PN but you have to keep taking it

REPLY
harpur | @harpur | 6 days ago

Is Nerva Vivo safe, effective, a scam?

REPLY
1 reply
View MoreView Less
Please sign in or register to post a reply.