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.

debbiehirsch | @debbiehirsch | Aug 3 7:25pm

In reply to @johnbishop "Welcome @debbiehirsch, There are several discussions and quite a few members who have shared their experience..." + (show)

I have been diagnosed with neuropathy on my legs, feet, and hands. I’m on medication but still in pain. I have tried many treatments but they have not helped so I’m looking for other options.

apex | @apex | Aug 3 7:48pm

Is anyone familiar with Pronerve6 for relief from neuropathy? If so, what were your results?

John, Volunteer Mentor | @johnbishop | Aug 4 8:09am

In reply to @apex "Is anyone familiar with Pronerve6 for relief from neuropathy? If so, what were your results?" + (show)

Welcome @apex, There is another discussion on the product that you might want to view here - ProNerve6: https://connect.mayoclinic.org/discussion/pronerve6/. There are also many different discussions on what helps neuropathy that you might want to scan through. Here's a link that lists discussions and comments - https://connect.mayoclinic.org/search/discussions/?search=what%20helps%20small%20fiber%20neuropathy.

Another great source of information if you haven't already discovered it, is the Foundation for Peripheral Neuropathy - https://www.foundationforpn.org/.

Have you been diagnosed with neuropathy? Do you mind sharing a little more about your diagnosis and treatments?

Sue, Volunteer Mentor | @sueinmn | Aug 4 10:05am

In reply to @apex "Is anyone familiar with Pronerve6 for relief from neuropathy? If so, what were your results?" + (show)

Here is an earlier discussion about it.
https://connect.mayoclinic.org/discussion/pronerve6/
Here are some "SCAM" signs:
Quantities of the specific ingredients, it is impossible to tell what you are buying.
Every link leads to a glowing review - that's just not possible in the real world.
Most of the product is sold "exclusively through their website"
Their products on Amazon & Walmart do not include a true list of the advertised ingredients
There are no research studies or independent reviews

I would call the a 5 on the Scam Alert scale.

apex | @apex | Aug 4 10:33am

In reply to @sueinmn "Here is an earlier discussion about it. https://connect.mayoclinic.org/discussion/pronerve6/ Here are some "SCAM" signs: Quantities of the..." + (show)

Thank you for your reply. Based on it, and my further searches, I've skipped buying any of the products. There's a wealth of information on this site and I think I'll stay with that.

Thanks for your response!

Leonard | @jakedduck1 | Aug 4 11:30am

@apexapril
There is no cure for neuropathy yet new treatments/cures are constantly coming on to the market. I would think that alone would be a clue.
I accept neuropathy for what it is an incurable illness and refuse to waste a bunch of money on products that probably won't work anyway. Sometimes you just have to accept things as they are. I have messaged people who take all sorts of vitamins and minerals, and whatever else and asked them if they helped and few reply positively. Good luck to you.
Take care,
Leonard

apex | @apex | Aug 4 1:23pm

In reply to @jakedduck1 "@apexapril There is no cure for neuropathy yet new treatments/cures are constantly coming on to the..." + (show)

Thank you for your post Leonard. I incurred the neuropathy after three bouts of Covid and broken ankle. My right ankle, my hands, and lower back are constantly on fire to the point of having very little feeling and constant pain.

I currently take morphine every day, and it helps somewhat, but I hate the addiction. Fortunately, I'm 76 and will probably die fairly soon, and I'll be shut of the whole mess.

Again, thanks for your thoughts!

bettyg81pain | @bettyg81pain | Aug 5 12:41pm

In reply to @debbiehirsch "I have been diagnosed with neuropathy on my legs, feet, and hands. I’m on medication but..." + (show)

Would you please tell us what treatments that you have had that did not work? Thanks

Jill Christine | @jillchristline | Aug 5 9:36pm

In reply to @apex "Thank you for your post Leonard. I incurred the neuropathy after three bouts of Covid and..." + (show)

Jake, All the power to you with morphine. If it helps, awesome at 76. Not going to ask how you get morphine for this...
I take Gabapentin and marijuana in the daytime. At night, it is marijuana and whiskey. I'm 61 and PN found me probably in 2020. No reason that I can find to explain it. My pulmonologist asked me a few questions and suggested Gabapentin.
I like the effects it has on me. I am mobile and going places and plan on bow hunting since I've practiced with my bow and bought new hunting garb worth $700.00 so I better HUNT.
Cheers, Jill

mrterry | @mrterry | Aug 6 11:48am

In reply to @memyselfi "Hi. I've told my PN story here before, so I'll keep it simple. It became a..." + (show)

@memyselfi

Hi.

I've told my PN story here before, so I'll keep it simple. It became a permanent fixture in my life a couple of years ago. The pain was most pronounced in my feet, much lesser in my lower legs, and even less so in my upper legs. Chronic pain became a feature of my life, as it has for many on this site. I work full time in the school system, and nary a day would go by where I wasn't in pain, pain that often spiked due to doing things on my feet.

Preamble over. I tried everything for pain mitigation:

--Yoga and stretching exercises
--Various supplements targeted for nerve damage/repair
--Working out my legs and feet on machines at the gym in an effort to increase circulation, usually at the cost of increased pain
--Chiro
--Massages
--Various OTC pain meds such as IBU
--Eventually Lyrica

I did these things regularly with great discipline.

But then I read of the possible side-effects of statins, one being causing or exasperating PN. I was on a statin for higher cholesterol. I decided to go off it after reading this in a thread on this forum.

Verdict: I can't say for certain what caused it, but after some weeks of not taking the statin and continuing my other routines/disciplines, I experienced a dramatic improvement in the pain my PN was chronically delivering me on a daily basis. The coincidence of my stopping to take the statin I was on and my improvement just can't be ignored. I'd put my current improvement level at something like 40%. I still have it/deal with it, but for heaven's sake I'm digging this respite from the pain levels I was previously experiencing.

I'm a little more than angry at myself for not researching the potential side effects of statin use before I began a regular regime of it. I do that as a matter of course with anything I take now, and urge everyone to take more control of their lives in this way. I'm rather astounded that Dr's who prescribe meds so often don't go over the potential side effects, and tell their patients to get back to them if such ill effects make themselves apparent in their bodies.

Anyway...this has been long-winded but the moral of my story is; BE CAREFUL OF STATINS--THEY MAY WELL CAUSE OR EXAPERATE PN! Yes, all caps on that.

Jump to this post

Three doctors wanted me to take statins. My cholesterol is a little high. I didn't take them. I may have dodged a bullet that could have made my pn worse. Thanks and the best of luck.