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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.

harpur | @harpur | 6 days ago
In reply to @harpur "Is Nerva Vivo safe, effective, a scam?" + (show)
@harpur

Is Nerva Vivo safe, effective, a scam?

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I have suffered with sciatica for 7 years and it is getting worse. I now have other nerve pain in my hands, legs, feet and hips. I've waited for Drs appointments for months and had shots (epidurals) in my spine. Medications such as Gabapentin seem to calm the pain a bit but make my intellect dull. Do you think Nerva viva would help?

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cowboys57 | @cowboys57 | 6 days ago
In reply to @norelle27 "So I’m in the same boat - neuropathy in both feet, non-diabetic and continues to get..." + (show)
@norelle27

So I’m in the same boat - neuropathy in both feet, non-diabetic and continues to get worse.
I work on my feet and up to 8 hours. I have a terrible time finding shoes that fit( high arches, narrow feet and hammertoes …
Had foot surgery 10 years ago.
I have read very positive reviews about Calmare or “ Scrambler” therapy. Painless, non invasive and drug free. Developed by 2 Johns Hopkins doctors- approved by FDA. 15 years - I am desperate to find relief. My pain in concentrated in my toes and ball of foot. That’s it -
A lot of doctors ( my neurologist for one) have never heard of this therapy-
I refuse to take gabapentin but will give Lyrica a try -
Google Calmare therapy to find more information-
I had been active most of my life ( marathon runner)Amateur Soccer player and aerobics.
Initially my career required a certain heel height and that combined with cabin pressure just made my feet worse.
It’s intermittent pain.
I am desperate for relief-

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I just completed 5 treatments for scrambler therapy. I have neuropathy from past chemo and diabetes type 2. The treatments did not work for me. But they did seem to wake up my nerves. The treatments are not painful. It is worth a try for you as everyone is different. I am using essential oils, am considering a tens unit. I am on gabapentin. Take a tramadol at bedtime only. Helps for the most part. Neuropathy is a difficult illness .

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4 replies
Mentor
John, Volunteer Mentor | @johnbishop | 6 days ago
In reply to @cowboys57 "I just completed 5 treatments for scrambler therapy. I have neuropathy from past chemo and diabetes..." + (show)
@cowboys57

I just completed 5 treatments for scrambler therapy. I have neuropathy from past chemo and diabetes type 2. The treatments did not work for me. But they did seem to wake up my nerves. The treatments are not painful. It is worth a try for you as everyone is different. I am using essential oils, am considering a tens unit. I am on gabapentin. Take a tramadol at bedtime only. Helps for the most part. Neuropathy is a difficult illness .

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Welcome @cowboys57, You are right, neuropathy is definitely a difficult illness to deal with. I only have the numbness and tingling with mine so it's not quite as bad for me but it's still aggravating to say the least. If you haven't seen the Foundation for Peripheral Neuropathy, it's a wealth of information for finding helpful information on neuropathy treatments - https://www.foundationforpn.org/living-well/.

Thanks for sharing your experience with the scrambler therapy. There are quite a few members who have discussed the scrambler therapy - https://connect.mayoclinic.org/search/?search=scrambler+therapy.

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laurenbent | @laurenbent | 6 days ago
In reply to @cowboys57 "I just completed 5 treatments for scrambler therapy. I have neuropathy from past chemo and diabetes..." + (show)
@cowboys57

I just completed 5 treatments for scrambler therapy. I have neuropathy from past chemo and diabetes type 2. The treatments did not work for me. But they did seem to wake up my nerves. The treatments are not painful. It is worth a try for you as everyone is different. I am using essential oils, am considering a tens unit. I am on gabapentin. Take a tramadol at bedtime only. Helps for the most part. Neuropathy is a difficult illness .

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I have type 1 diabetes (45 years) and terrible peripheral neuropathy in my feet and hands. I’ve been taking Cymbalta for 10 years (60 mg) and not sure how I’d live without it. I’ve used gabapentin before and it made me sleepy. I’ve used tramadol when my pain became unbearable but haven’t needed it in ages. For me Cymbalta has been a lifesaver

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1 reply
sh0rtie | @sh0rtie | 6 days ago
In reply to @cowboys57 "I just completed 5 treatments for scrambler therapy. I have neuropathy from past chemo and diabetes..." + (show)
@cowboys57

I just completed 5 treatments for scrambler therapy. I have neuropathy from past chemo and diabetes type 2. The treatments did not work for me. But they did seem to wake up my nerves. The treatments are not painful. It is worth a try for you as everyone is different. I am using essential oils, am considering a tens unit. I am on gabapentin. Take a tramadol at bedtime only. Helps for the most part. Neuropathy is a difficult illness .

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What Essential Oils are you using? Laura Henderson

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heisenberg34 | @heisenberg34 | 5 days ago

Once again, folks. There are no "miracle cure" supplements. Neuropathy cannot be cured...yet. It can only be managed, although I am still looking for something to manage it.

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adacey10 | @adacey10 | 3 days ago
In reply to @valyruss "@scain ....Hopefully my experience dealing in the past with same issues will help you.. -a neurologist..." + (show)
@valyruss

@scain ....Hopefully my experience dealing in the past with same issues will help you..
-a neurologist will do zillion of tests, the most important is a large nerve electrical conduction test-if positive -the neuro will tell you there's no treatment for peripheral neuropathy and put you on Gababentin...a neuro is not doing test for small fiber neuropathy...
-a podiatrist will do a skin biopsy for small fiber neuropathy ( SFN)-if positive-the podiatrist will tell you there's no treatment and put you on Gababentin...or propose to put you on TEENS unit...
After going thru all these for three years and due to my excruciating symptoms- I was desperate and almost suicidal...but God providence guided me to a clinical pain institute doing Sanexas treatment ( google it) and B12 shot straight into my feet..it turned out my peripheral nerves were starving for B12 which was prevented by metformin to be absorbed....of course my primary not even wanted to hear about it although my B12 in system was double level.
After just three month and twice /week treatment with Sanexas (stopped metformin and replace it with jardiance ) and some other life style changing -I'm completely healed...
Hope this help!

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Hi Valyruss

I am so happy to hear that you found a treatment that actually works for Sciatic pain. What exactly is treatment with Sanexas? what is the Jardiance for diabetes?

I have been dealing with Sciatica for over ten years and have been taking Gabapentin for as long as I can remember, and it only provides temporary relief for sleeping.

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cit10jetjockey | @cit10jetjockey | 2 days ago
In reply to @cowboys57 "I just completed 5 treatments for scrambler therapy. I have neuropathy from past chemo and diabetes..." + (show)
@cowboys57

I just completed 5 treatments for scrambler therapy. I have neuropathy from past chemo and diabetes type 2. The treatments did not work for me. But they did seem to wake up my nerves. The treatments are not painful. It is worth a try for you as everyone is different. I am using essential oils, am considering a tens unit. I am on gabapentin. Take a tramadol at bedtime only. Helps for the most part. Neuropathy is a difficult illness .

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I tried a ten unit and it did nothing. My PN is in my legs and feet. I have numbness and tingling and balance issues but no pain. Do waste your money. PN is here to stay.

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1 reply
bshiver | @bshiver | 2 days ago
In reply to @laurenbent "I have type 1 diabetes (45 years) and terrible peripheral neuropathy in my feet and hands...." + (show)
@laurenbent

I have type 1 diabetes (45 years) and terrible peripheral neuropathy in my feet and hands. I’ve been taking Cymbalta for 10 years (60 mg) and not sure how I’d live without it. I’ve used gabapentin before and it made me sleepy. I’ve used tramadol when my pain became unbearable but haven’t needed it in ages. For me Cymbalta has been a lifesaver

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Hi Lauren. So you take Cymbalta for the peripheral neuropathy? I was just prescribed Cymbalta on 2/4/25 for neuropathy and RA-Chronic pain. Did you have any extreme increase in heartrate or blood pressure when first taking Cymbalta? Thanks for posting.

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marthadean | @marthadean | 1 day ago

I had a problems with Cymbalta. It made me feel "too good" and then I had scarey mood swings and vertigo. Apparently it works for some but not for me.

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