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 think one challenge is that pain is a very personal and subjective thing — my 2/10 might be someone else's 8/10 (or vice-versa).

Some people dealing with nerve pain get great relief from CBDs, for example, but they did nothing for me when I was in hospital, and opiods just gave me weird, intense dreams (to the point I was afraid to close my eyes). Tylenol, Pregabalin, and Voltarin (ointment) were the only things that helped me, along with stretching and flexing as much as I was able.

That's why I doubt anyone's going to The Right Answer in this thread. There are just too many variables, and too much variation from person to person.

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@paulbse

Spinal Cord Implants for Peripheral Neuropathy: Has anyone had any experience (good or bad) with spinal cord stimulators? How well did it work? What percentage of pain relief did you realize? Were you able to come off your pain meds? Did you experience any infection issues? Brand of the device you had implanted? Based on your experience, would you recommend an implant to relieve neuropathic pain?

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I am 8 weeks post op with scs by Abbott for PN. Worst decision ever! My trial was successful so I had the scs implant. Abbott rep has tried at least a dozen programs and none have worked. Pain is worse than the original pain. I am taking twice as much pain meds as before. They include Amitriptyline, gabapentin, CBD Delta8, Tramadol, Vicodin. I don’t take them all every day but the pain is bad even when I turn the scs off. The surgeon is no help. Says he is just the installing technician. I would love some advice.

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Oh my goodness, so sorry to hear. My pain management doctor pulled the tramadol by stating "they don't do that anymore". Then offerred SCS, and some kind of compounded topical creme of Gabepentin, Lidocaine, and ketamine. I was afraid to get the SCS, and the topical is only marginally effective. I also have Gabapentin capsules. and this med doesn't work well. I have to keep it to 600mg only at night with the Gabapentin. I'm very sorry to hear of your experience with the SCS. Every other day, I contemplate getting it but choose not to. Thank you for reporting on it.

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I’ve just started R-ALA and Benfotiamine(separately) but I am finding the ALA is upsetting my stomach. Anyone got any ideas.

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@bigjohnscho

I’ve just started R-ALA and Benfotiamine(separately) but I am finding the ALA is upsetting my stomach. Anyone got any ideas.

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You didn't say what dosage of R-ALA you're taking, but I've read from other commentors that you should start with a low dose and work your way up. I had the same problem, but now take 400mg a day.

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I’ve started on 200mg R-ALA and 300mg Benfotiamine
I don’t know if these are considered low doses.
Did you stop taking yours for a few days to get over the stomach problems

Thanks John

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@solobeee1

I have had SFN for 15 years and been looking for relief everywhere. The best I’ve found for pain is LDN ~Low Dose naltrexone but I have found absolutely nothing for numbness & presently I am at the end of my rope.
A friend just suggested looking into Hyperbaric Oxygen Therapy for Chronic Neuropathic Pain.
I just found this ~ Hyperbaric Oxygen Therapy (HBOT) is an effective treatment for neuropathy. By driving oxygen deep into tissues, it reduces cell death and pain symptoms. Hyperbaric oxygen also stimulates the growth of new blood vessels, enabling the body to increase effective oxygen and nutrient delivery.
Has anyone had experience with this? Please let me know.
Thanks.
BTS

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I tried this 2x week for 6 weeks along with red light therapy, TENS ,and ultrasound treatment I saw no change.

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I have been mulling over the various so called treatments for neuropathy.Those that immediately spring to mind are:-
Alpha Lipoic Acid, Vitamin Bcomplex, Bentothiamine,
Acetyl L Carnitine, etc.we are all searching for that magic treatment. Why don’t we start posting our successes and we would all benefit and it would stop people going down blind avenues time and time again

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@whalen1014

Hi, do you think you could give a brand name on compression socks? There are so many…
Thank you , Deb M

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I wear the Futuru brabdc 20-30cm -CVS and Amazon -
but I still numbness in both feet.

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LDN Works great for pain.
Low dose naltrexone.
I’ve been on 4.5 mg for a year & a half.

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