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.

I liken trying to find something that helps my neuropathy to playing whack a mole at a carnival. Sometimes it seems the target keeps moving. I’ve tried so many things it’s hard to keep track of them all.

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@rlh

I liken trying to find something that helps my neuropathy to playing whack a mole at a carnival. Sometimes it seems the target keeps moving. I’ve tried so many things it’s hard to keep track of them all.

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Has anything you’ve tried helped.

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@bigjohnscho

Has anything you’ve tried helped.

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I’m not sure but feel better lately. It could be the higher dose of b12, vitamin d +k2, and taking 4.5 mg of low dose naltrexone. I need to be more scientific about journaling things so I have a better handle on what is working.

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Under scams Anyone tried nooro ultimate foot massager SCAM?Anyone tried the nooro ultimate foot massager they claim it works wonders Been trying it for 5 days now nothing so far 15minutes a day twice.

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There has been many relief ideas from people who have PN. Yes there are lots of scams, especially those ads on Facebook. Anyone can post those ads with lots of stories about people and their relief. BEWARE! I've been burned a few times. Now NO MATTER where I get any advice, I do a thorough investigation before I try anything.

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@daves2

Under scams Anyone tried nooro ultimate foot massager SCAM?Anyone tried the nooro ultimate foot massager they claim it works wonders Been trying it for 5 days now nothing so far 15minutes a day twice.

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Hi @daves2,
I moved your question about the foot massager to this existing discussion
- Neuropathy: What works and what are scams?
https://connect.mayoclinic.org/discussion/what-works-and-what-are-scams/
We used to have a discussion dedicated to this foot massager that I had to removed because it attracted spammers and fake reviews trying to increase attention about the product. That screams scam.

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@bigjohnscho

Has anything you’ve tried helped.

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Trying nooro ultimate foot massage For one week only will advise device already defective sending me new one after one week I suspect it’s a scam and all there claims ar BS

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FOR what its worth, I have CIDP, chronic inflammatory demialating polyneuropathy.
I take a high dose of gabapentin and Topamax. I have no nerve pain. If I stop taking those, severe debilitating nerve pain returns, so they are working.
Just my experience.

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I can relate to most of these posts....PN is a life comfort stealer. It looks like there are so many reasons for this malady..some from surgeries, some from illnesses..or injuries. I'm looking for relief from whatever the cause could be..and not with more medications. The different kind of 'socks' looks to be helpful for some. I also feel that by using different non-invasive types of therapy whether it be acupuncture, inserts, better shoes....massage...cleaner diet....that some of these have worked wonders for so many that now suffer, that maybe it's time to try something different in our pursuit of comfort and relief from at times, the intractable , searing pains of PN. I recently talked with three women in a waiting room at my local hospital..when I noticed that they were all wearing Hoka shoes. They swore by them!! I am now dealing with pins and needles as well as extreme heel pain that causes me to walk on my toes..can't bear to put my heel down as the pain is too intense....and I'm an athlete!....not exercising..walking on my treadmill and outside is not an easy life sentence for me..so I'm always seeking out ways to lighten my load here.
Heat doesn't help me...but ice seems too..at least getting a bit numb is a different feeling then having to be conscious of my feet at every moment of the day. I also massage my feet a lot....getting more of a blood supply going...also taking supplements that aid in nerve damage, which have helped I feel. I would love to have anyone who's tried different walking shoes that have benefited their lives..please post for us!! What's making a difference??? Not satisfied with a "there's nothing that can be done" attitude! Bless you all!!!

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@bigjohnscho

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.

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My feet burn with neuropathy. A nurse friend sent me (from Amazon) a bottle of frankincense & myrrh. A very small amount rubbed into my feet actually soothes the burning pain. The bottle actually says Neuropathy on it. Use 2 or 3 times a day. Honestly helps

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