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.

@thetillmanthetillman

Well I bought mine from a usa co I use to but tabs to help pn I however if you Google compression boots they are on sale from around 80 to 90 sterling like everything else one can pay 10 times that but these I believe are for fit athletes mine just cover the feet and legs up 2 my knees I put them on twice a day 30 mins to 40 max per time especially helpful to me at night there are a few health warnings re people who should not use these you need to check this for yourself or your doc I hope this helps my pn is still there but not so much at night and I think it's slightly easier during g the day I also walk one hour a day and swim 30 mins good luck james

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Thank you for your quick reply!😊

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Has anyone heard of Nerve Forte to help with the pain and numbness of neuropathy? How about MMP13 enzyme that is suppose to be the root cause of neuropathy? Can't get a good nights rest due to itching and stabbing pains in feet. I have a pair of reflexology shoes that I wear in the evenings and they seem to help some. I am open to suggestions for help. Thank you, Laura Henderson

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@sh0rtie

Has anyone heard of Nerve Forte to help with the pain and numbness of neuropathy? How about MMP13 enzyme that is suppose to be the root cause of neuropathy? Can't get a good nights rest due to itching and stabbing pains in feet. I have a pair of reflexology shoes that I wear in the evenings and they seem to help some. I am open to suggestions for help. Thank you, Laura Henderson

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Welcome Laura @sh0rtie, I'm no expert and have purchased a lot of stuff that was purported to help with neuropathy but hasn't done much to help me personally. It does contain 3 ingredients that have shown to help with neuropathy and it provides a lot of research links but it doesn't provide any clinical trials or test data.

And then there is this at the bottom of their website which screams "buyer beware" to me.

"The products and information shared on this website have not been reviewed or approved by the FDA, nor have any formal clinical trials or studies been conducted. This content is not meant to diagnose, treat, cure, or prevent any medical conditions. It is provided solely for informational and educational purposes, and individual results may vary. Any use of the products or reliance on the information provided is at your own discretion, and we assume no liability for the outcomes or actions taken based on the information shared here. Webmasters have the opportunity to earn commissions by promoting and linking to nerveforte.today through the Nerve Forte Affiliate Program. This program operates like other affiliate programs, offering participants the chance to earn revenue for successful referrals. FTC Disclaimer: While we have not been paid to endorse this product, we may receive a commission if you make a purchase through one of our affiliate links."

I don't have pain with my neuropathy just the numbness and some tingling. Myself and others have share our neuropathy journey in another discussion here that you might find helpful - https://connect.mayoclinic.org/discussion/member-neuoropathy-journey-stories-whats-yours/.

You might find these discussions helpful:
-- Neuropathy Pain at Night: What helps?: https://connect.mayoclinic.org/discussion/night-pain-2/
-- Peripheral Neuropathy - Shooting Foot Pains at Night: https://connect.mayoclinic.org/discussion/peripheral-neuropathy-shooting-foot-pains-at-night/

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Well, I'm not sure which of these has helped, but I no longer take (almost) anything for PN pain.
1) VEIN ABLATION/PHLEBECTOMY I had itching on my left (the more painful side) inner thigh and some of the veins in my calf were painful to touch. I took no meds relating to this and I don't know if it was the removal of the veins which were another source of nocive stimuli, or the compression stocking that I wore in association with the procedure, but the drop in intensity and frequency of the PN symptoms was immediate.
2) My GFR is down to 40 and I'm drinking a LOT more water to try to help mt kidneys filtering function.
3) I've been taking a capsule of fish oil (there seems to be some evidence of beneficial effects combining enalapril which I take for HBP and fish oil) as well as
Pre-DX Nerve support. I started taking these around the same time as the vein procedure so the timing makes it more difficult to say which is more important, although I still seem to have less pain when I wear the compression stocking.

Hope any of this may be useful to some one!

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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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Neuropathy has been my nasty sidekick for the past twelve years....it is in my feet and part of
my lower legs....tried ever thing from tens to blue laser ,,,,with no results...after a couple of
years of terrible times, my daughter recommend a combination of hydromorph contin and
jamp-pregabalin...it has reduced my neuropathy from a 8 out of 10 to a manageable 2.
I take 6mg hydromorph at 7am and 7pm,,,,200mg pregabalin at 12 noon and 9pm...
Herbert C Wyness

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@wynesshc

Neuropathy has been my nasty sidekick for the past twelve years....it is in my feet and part of
my lower legs....tried ever thing from tens to blue laser ,,,,with no results...after a couple of
years of terrible times, my daughter recommend a combination of hydromorph contin and
jamp-pregabalin...it has reduced my neuropathy from a 8 out of 10 to a manageable 2.
I take 6mg hydromorph at 7am and 7pm,,,,200mg pregabalin at 12 noon and 9pm...
Herbert C Wyness

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Hello Herbert @wynesshc, Welcome to Connect. It's good to hear that you are getting some relief with the pain medications. I've been dealing with neuropathy in my feet and legs since my early 50s and now at 81, I'm just happy I can still walk. I'm one of the fortunate ones with only numbness and some tingling and no real pain with my small fiber PN. I have also tried many different treatments to help with the numbness without much success. I shared my neuropathy journey in another discussion here - https://connect.mayoclinic.org/comment/310341/.

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Thanks for the wealth of information,,,,I am going to be 89 next March, so life has afforded me some time for
adventure and great times...so the neuropathy has played a small part of my life.....I was in Asia Pacific when the problem started the it was sometime after returning home that I was told what the problem was...the first few years were tough, as I had pain, numbness, needles , cold and sometimes my foot would twist sideways ..
My balance is a bit of a problem and i have fallen a couple of times when working in the yard...
Herbert C Wyness

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@wynesshc

Neuropathy has been my nasty sidekick for the past twelve years....it is in my feet and part of
my lower legs....tried ever thing from tens to blue laser ,,,,with no results...after a couple of
years of terrible times, my daughter recommend a combination of hydromorph contin and
jamp-pregabalin...it has reduced my neuropathy from a 8 out of 10 to a manageable 2.
I take 6mg hydromorph at 7am and 7pm,,,,200mg pregabalin at 12 noon and 9pm...
Herbert C Wyness

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B12 mecobalamin injections may help.

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@bigjohnscho

Has anyone tried the Orthoback Vibrastone?It is a hand held device which vibrates and heats when applied to the area of neuropathic pain, feet for example. It’s on the internet with an explanation of how it works.

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Thought it seemed plausible about heat and massage but suspicious of other claims.

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@wynesshc I am taking B-12 Complex drops by Native Path. I take 1 dropper full every morning. I have bought some reflexology shoes that I wear every day for at least 30 minutes. If I feel that numbing feeling coming on when I put the shoes on and walk I can feel that it fade away to some degree. I haven't succeeded in getting that feeling to leave my feet. I also bought a pair of barefoot shoes that I wear when I am in the house and wear them all day long. It seems to help a bit to contain the numbing that is going on. Thank you for replying to my post.

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