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.

@bb0753

Yes I tried this along with red light therapy, some type of ultrasound treatment and some type of electrical stimulation. It was a package deal. It did not help.

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I was sold a package by a local chiropractor that used red light therapy and electrical stimulation. Didn't help at all. In fact, my feet are even more painful now, and I started waking up with terrible cramps in both legs.

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@skipneuroathy

I do not know to describe a compression treatment, but all I know is putting on the socks lessons my feet pain so that often it will let me sleep. Also, when I awaken at night and find it hard to go back to sleep, I take off the socks and that helps.

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I had to wear compression socks for vein surgery. I hated them. I now have pn in my feet and hands. I bought some different compression socks on Amazon. They feel comfortable. They do help. I wear them during the day but not at night. It's made a difference.

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Have you caught any of the Foundation for Peripheral Neuropathy summer webinar series yet? TOMORROW is Living Well with Peripheral Neuropathy: Enhancing Quality of Life.

Session 5: Living Well with Peripheral Neuropathy: Enhancing Quality of Life
Wed, Jul 31, 2024 6:00 PM - 7:00 PM CDT
Register: https://register.gotowebinar.com/register/7974010607903482966

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@carolinlv

What do statins do to peripheral neuropathy?

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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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@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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Thank you so much for taking the time to share this information with me. I’ve had negative/borderline horrible side effects from so many medications that I usually do my due diligence now before trying anything. There doesn’t seem to be much out there that doesn’t have a laundry list of side effects attached. I don’t recall seeing neuropathy as a side effect for rosuvastatin, but I may have to do more digging, which I will do!! I just got my blood work back and my statin is doing its job… Cholesterol down to 139! Don’t know if that’s the medication’s doing or my own. My diet has changed dramatically over the last year, especially. My anxiety over all these health issues keeps my appetite to a minimum and when I do eat, it’s something pretty simple. So, I may be getting my cholesterol in line without medication. I won’t know until I stop it! Thanks again for the help! I hope you continue to feel better with each day!

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Hi memyselfi!
I don't have cholesterol problems but I will remember statins and PN if the situation arises as there is a chance cholesterol will rise as we age. I am 61 for 46 more days. Yes, I'm already counting! LOL
Once diagnosed with PN (about 4 months ago) I've graduated my Gabapentin to 2700mg per day. I add Cat's Claw (a vine that grows in the Amazon which has helped issues like arthritis for hundreds of years). I also include marijuana which enhances Gabapentin quite nicely. In the eve, I take a cocktail of whiskey.
The pain is significantly less, although the last three days the PN has tested my teeth and jaw. Ibuprofen takes that down thankfully.
I am planning on bow hunting and can draw back and shoot pretty well. I'm not where I want to be but that is a work in progress. I'm happy that I can sleep for a few hours at a time.
So best regards to all who read this and thank you memyselfi for your input!
Cheers,
Jill the Pill

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My husband has had pn from chest to feet for five years. He recently suddenly lost ability to walk and had worsening hyper reflexia and clonus. He was rushed to UCSF and they are looking at b12! They are studying if b12 can look normal in blood but not be reaching the cells. Waiting for results. This is apparently a rather new study. Just passing info on. Glad the local neurologist knew about the study. Unfortunately the spinal cord lesions and demyalization have progressed from c1 to T12 so pretty involved. He has been diagnosed in past as having transverse myelitis.

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Has anyone tried “Mama Bear Oasis” cream. It’s a magnesium based cream for your feet?

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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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@alfer

Has anyone tried “Mama Bear Oasis” cream. It’s a magnesium based cream for your feet?

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I haven't tried the Mama Bear Oasis cream but I do use the Life-Flo Magnesium Lotion on my legs and feet pretty much every day. I don't have the pain with my neuropathy, just numbness but it does keep my legs and feet moisturized and that helps plus it's fairly inexpensive - https://www.amazon.com/dp/B09PVMTM9W.

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