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.

northoftheborder | @northoftheborder | May 11 9:22pm

I hope no one here is saying that "all natural medicine is crap"; it's just not really tested yet, so you're making yourself into an experiment (natural medicine that's gone through trials and approvals is simply called "medicine," the same as the more-synthetic stuff).

Lots of good and lots of harmful stuff comes from natural sources, and sometimes the same substance can be either depending on the usage and dose (e.g. digitalis from foxglove, which in smaller doses can help treat heart disease, and in larger doses is a popular poison in golden-age murder mysteries).

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ritasavage | @ritasavage | May 11 11:03pm
In reply to @bigjohnscho "Surely some people have found something that has helped with this awful disease. It would be..." + (show)
@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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I have had peripheral neuropathy since 2016 after a cancer diagnosis and chemotherapy. I have tried and still take these medications without a lot of relief, pregabalin, duloxetine, oxicodone, topical RX. All of this causes fatigue. I've seen neurologist and pain clinics and they don't give me any other recommendations than what I'm doing. Always hopeful!

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1 reply
Mentor
John, Volunteer Mentor | @johnbishop | May 12 8:03am
In reply to @ritasavage "I have had peripheral neuropathy since 2016 after a cancer diagnosis and chemotherapy. I have tried..." + (show)
@ritasavage

I have had peripheral neuropathy since 2016 after a cancer diagnosis and chemotherapy. I have tried and still take these medications without a lot of relief, pregabalin, duloxetine, oxicodone, topical RX. All of this causes fatigue. I've seen neurologist and pain clinics and they don't give me any other recommendations than what I'm doing. Always hopeful!

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Hi @ritasavage, Welcome to Connect. Being hopeful is a great asset to those of us with neuropathy. I'm sorry the medications haven't provided a lot of relief. The Foundation for Peripheral Neuropathy has a good list of complementary and alternative treatments that you might find helpful - https://www.foundationforpn.org/wp-content/uploads/2020/08/Complementary-and-Alternative-Treatments-Revised-2020-final.-1.pdf

Have you tried any non-medication treatments to see if they may provide some relief?

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1 reply
Mentor
John, Volunteer Mentor | @johnbishop | May 12 8:26am
In reply to @altucci "It is very frustrating to patiently seek to find a root cause of neuropathy. I reached..." + (show)
@altucci

It is very frustrating to patiently seek to find a root cause of neuropathy. I reached a point where I seem to get very little hope from doctors and I get sucked by supplement peddlers. Is there such a thing as the root cause of this condition? Has anyone been held? Is this orthopedic, metabolic or both? It seems to be a field of endeavor that would easily render super-status to someone or a company who can effectively tackle this elusive nightmare.

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Welcome @altucci, It definitely is frustrating and the best thing you can do to help yourself is learn as much as you can about the condition and what treatments are available that may help. My diagnosis is idiopathic small fiber peripheral neuropathy and my neurologist thought it might be hereditary.

Here are a few sites that have helped me...
--- Neuropathy Commons: https://neuropathycommons.org/neuropathy/neuropathy-overview
--- Foundation for Peripheral Neuropathy: https://www.foundationforpn.org/living-well/
--- Matthew B. Jensen YouTube Channel (easy to understand videos): https://www.youtube.com/@MatthewBJensen

Do you mind sharing a little more about your diagnosis?

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kbirchem | @kbirchem | May 12 8:56am

I have PN . I take R Alpha lipoic acid 1200 mgs per day . I also take Acetyl Carnitine , vitamin D , Fish oil . I also take 800 mg of Gabapentin . I also take one thc gummy in the morning , At night
I put a salve on my feet . It is Mary Janes salve . It is 4000 mg of cbd . I mix it with Magnesium lotion . I really quiets my feet down at night . I wish you the best . Never quit . Never give up or in !!

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1 reply
jmp1234 | @jmp1234 | May 12 9:33am

Low thc and higher cbd percentages. From a licensed and regulated cannabis dispensary. Personal experience of myself, partner, and fellow medical cannabis patients. Period.

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jmp1234 | @jmp1234 | May 12 9:41am
In reply to @jakedduck1 "@bigjohnscho How many members on connect have you seen post a cure or even significant improvements?..." + (show)
@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 posted about my symptom control with legitimate medical cannabis topical (homemade with coconut oil base) . Your post is so VERY spot on. I gave up trying to educate folks. I concluded many folks seek shortcuts and entitled based answers . Yes. I am being judgy. Ty for a fact based post.

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1 reply
bigjohnscho | @bigjohnscho | May 12 9:44am
In reply to @kbirchem "I have PN . I take R Alpha lipoic acid 1200 mgs per day . I..." + (show)
@kbirchem

I have PN . I take R Alpha lipoic acid 1200 mgs per day . I also take Acetyl Carnitine , vitamin D , Fish oil . I also take 800 mg of Gabapentin . I also take one thc gummy in the morning , At night
I put a salve on my feet . It is Mary Janes salve . It is 4000 mg of cbd . I mix it with Magnesium lotion . I really quiets my feet down at night . I wish you the best . Never quit . Never give up or in !!

Jump to this post

Thanks for that , it looks as if you’ve got a brilliant routine going. Unfortunately I take that much medication for all my other ailments I am very limited in what I can take due to interactions.
It’s still encouraging to hear from someone who’s doing OK. All the best John

REPLY
ritasavage | @ritasavage | May 12 10:44am
In reply to @johnbishop "Hi @ritasavage, Welcome to Connect. Being hopeful is a great asset to those of us with..." + (show)
@johnbishop

Hi @ritasavage, Welcome to Connect. Being hopeful is a great asset to those of us with neuropathy. I'm sorry the medications haven't provided a lot of relief. The Foundation for Peripheral Neuropathy has a good list of complementary and alternative treatments that you might find helpful - https://www.foundationforpn.org/wp-content/uploads/2020/08/Complementary-and-Alternative-Treatments-Revised-2020-final.-1.pdf

Have you tried any non-medication treatments to see if they may provide some relief?

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Thank you for the information link and reply. I am beginning to research and talk to people with neuropathy to see what other proactive steps I can take. Medical doctors try to manage the pain with little knowledge of other alternatives.

REPLY
kbirchem | @kbirchem | May 12 11:35am
In reply to @jmp1234 "I posted about my symptom control with legitimate medical cannabis topical (homemade with coconut oil base)..." + (show)
@jmp1234

I posted about my symptom control with legitimate medical cannabis topical (homemade with coconut oil base) . Your post is so VERY spot on. I gave up trying to educate folks. I concluded many folks seek shortcuts and entitled based answers . Yes. I am being judgy. Ty for a fact based post.

Jump to this post

One thing that I forgot to post . I have had 3 sets of PRP injections . My feet used to be cold and the feeling and color were not good. My color in my feet is so much better . The feeling and warmth of my feet is also better. I used to take Lyrica . It is an evil, evil medication . It gave me very dark thoughts and anxiety attacks. Wish you the best in your PN journey . KTB

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