1. < Neuropathy

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.

carolinlv | @carolinlv | Jul 27 9:36am
In reply to @skipneuroathy "Some time ago, I saw an ad for "diabetic socks". Since neuropathy often follows diabetes and..." + (show)
@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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bigjohnscho | @bigjohnscho | Jul 27 10:00am

Statins are one of the major causes of peripheral neuropathy

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thelmathomas76 | @thelmathomas76 | Jul 28 6:21pm
In reply to @carolinlv "What do statins do to peripheral neuropathy?" + (show)
@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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1 reply
carolinlv | @carolinlv | Jul 28 7:08pm
In reply to @thelmathomas76 "Get off the statins as fast as you can!! That is nasty stuff and causes so..." + (show)
@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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bwillob54 | @bwillob54 | Jul 28 8:29pm

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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1 reply
Jill Christine | @jillchristline | Jul 28 9:46pm
In reply to @bwillob54 "I have been suffering from neuropathy from unknown cause for almost 3 years. And yes I..." + (show)
@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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skip | @skipneuroathy | Jul 28 11:26pm
In reply to @rybren "Nice to hear something is working. Can you describe decompression treatment? What’s involved with this approach...." + (show)
@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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1 reply
persistentc | @persistentc | Jul 29 9:38am
In reply to @bb0753 "Yes I tried this along with red light therapy, some type of ultrasound treatment and some..." + (show)
@bb0753

Yes I tried this along with red light therapy, some type of ultrasound treatment and some type of electrical stimulation. It was a package deal. It did not help.

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I was sold a package by a local chiropractor that used red light therapy and electrical stimulation. Didn't help at all. In fact, my feet are even more painful now, and I started waking up with terrible cramps in both legs.

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mrterry | @mrterry | Jul 30 9:48am
In reply to @skipneuroathy "I do not know to describe a compression treatment, but all I know is putting on..." + (show)
@skipneuroathy

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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I had to wear compression socks for vein surgery. I hated them. I now have pn in my feet and hands. I bought some different compression socks on Amazon. They feel comfortable. They do help. I wear them during the day but not at night. It's made a difference.

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Mentor
John, Volunteer Mentor | @johnbishop | Jul 30 1:49pm

Have you caught any of the Foundation for Peripheral Neuropathy summer webinar series yet? TOMORROW is Living Well with Peripheral Neuropathy: Enhancing Quality of Life.

Session 5: Living Well with Peripheral Neuropathy: Enhancing Quality of Life
Wed, Jul 31, 2024 6:00 PM - 7:00 PM CDT
Register: https://register.gotowebinar.com/register/7974010607903482966

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