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.

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)
@debbiehirsch

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.

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

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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)
@apex

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!

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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

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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.

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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.

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1 reply
anitaxblack339 | @anitaxblack339 | Aug 6 6:31pm
In reply to @cgs "Contact Loma Linda medical neuropathy clinic free video call they have testing and treatment with 90%..." + (show)
@cgs

Contact Loma Linda medical neuropathy clinic free video call they have testing and treatment with 90% improvement/ results
I'm going God willing.

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Could some one call me?

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1 reply
Moderator
Colleen Young, Connect Director | @colleenyoung | Aug 6 8:42pm
In reply to @anitaxblack339 "Could some one call me?" + (show)
@anitaxblack339

Could some one call me?

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@anitaxblack339, Mayo Clinic Connect is an online discussion forum. There isn't a telephone option. How can I help?

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apex | @apex | Aug 7 7:29pm
In reply to @mrterry "Three doctors wanted me to take statins. My cholesterol is a little high. I didn't take..." + (show)
@mrterry

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.

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Hello Mr Terry,

Thanks for your post. So far, I've been able to dodge the statin bullet, but I'm sure it won't be long before they start trying to push it.

Since the three bouts of Covid and a broken ankle, they've got me on a boatload of other stuff, so one day at a time.

Take care of yourself,
Jim

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mrterry | @mrterry | Aug 7 8:09pm

Thanks I will. You also take care.

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debralucas059 | @debralucas059 | Aug 18 5:46pm
In reply to @johnbishop "Wished it was that simple as only one drug/supplement being the best treatment for peripheral neuropathy...." + (show)
@johnbishop

Wished it was that simple as only one drug/supplement being the best treatment for peripheral neuropathy. I'm no medical expert but it seems that there are a lot of different causes for neuropathy and no one treatment seems to help every possible cause. I think that is why there are so many different complementary and alternative treatments that have helped some folks but not everyone - https://www.foundationforpn.org/treatments/

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I take a supplement by Immunovites called NA R-Alpha Lipoic Acid 600mg USP. I searched and found this on YouTube from the Nerve Doctors. I know how neuropathy feels like and this works for me. I bought it from Amazon or Walmart. It works great!! I hope it helps you.

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1 reply
bigjohnscho | @bigjohnscho | Aug 20 7:04am

I am very interested in your posting.Can you tell me a little more. Where to purchase this and is it in capsules. I’ve tried R-ALA before and it upset mu stomach. I would be most grateful if you could let me know all the details

John

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btrudell3119 | @btrudell3119 | Aug 20 11:58am

Here's my experience. I had high blood sugar my A1C was over 10. I read up about and decided to take action. I went on a keto diet and was also taking alpha lipoic acid. After about 6 months I lost 70 lbs and my A1C went to 4.7. Plus many other improvements like blood pressure as my doctor said fantastic. After 7-8 months I was walking on the floor and noticed I could feel my feet again the sensation of feeling individual areas of my soles returned. But after 2 years my toes were still numb so I did more reading and saw that acetyl-l-carnitine might help. Now at that time I also still had serious brain fog as they say and I'm a software engineer so I was seriously thinking I might need to find other ways to get income. But after just a couple of weeks that was gone but what also happened was the feeling in my toes came back and absurd leg cramps I was experiencing went away. I could start talking about coenzyme q10 but that's for another post. And frankly it makes sense since as you age you have less of these in you body. And since the safety of these is pretty good all I can say is it's probable worth a try. They worked for me and I'm amazed and happy with the results.

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