Small fiber peripheral neuropathy and alcohol

Posted by jeffrapp @jeffrapp, Jun 6, 2019

I'm fairly new to the forum. I've searched for this topic in previous discussions, but I've been unable to find it. If I've goofed, perhaps @johnbishop can direct me. Also , I'd appreciate directions as to how to search the forum in the future.
At any rate, I'm 74 y/o, diagnosed with idiopathic small fiber PN about 2 years ago. I've had the million doctor w/u at UCSF, including a positive skin biopsy, so I'm 98% certain that the diagnosis is correct, although, of course, I'm still searching and hoping for a specific, treatable diagnosis. My symptoms are mostly allodynia manifesting as sometimes severe burning of the feet when wearing shoes and/or socks, and burning or irritation of the legs when wearing heavy pants like jeans or even from bed sheets. I'm on multiple meds. The only thing that helps for sure is warm weather.
My question involves alcohol. At least one of my many MD's think it's likely that the cause of the PN is drinking. Others disagree. My consumption had been 3-4 drinks per evening for many years (a martini and 2 or 3 glasses of wine). As a trial, I stopped drinking completely for about 3 months, yet the PN progressed up my legs and got worse. Currently, I reduced my consumption to a martini and glass of wine (2-3 drinks per evening). My diet is pretty good. I'm active and productive.
Does anyone have an informed opinion or experience similar to mine. In particular, I would appreciate a reference to a good article which addresses this subject.
I understand that alcohol is a neurotoxin, so the simplest answer would simply be to stop drinking. However, I enjoy my martini and glass of wine. Furthermore, my evening drinks distract me somewhat from the pain. At my age, I'd hate to give them up if it's not really going to make a difference. On the other hand, I would do so gladly if I were convinced that it would stop the progression of the PN, or even allow my nerves to heal somewhat.
An additional question is if anybody can refer me to a practitioner (not necessarily an MD) somewhere near me who they have had a good experience with. I live in the wine country north of San Francisco. @johnbishop may want to convert this to a separate topic.
Thanks in advance.

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jeffrapp | @jeffrapp | Feb 2 8:58pm

In reply to @jamessaxo "@jeffrapp You need to search" effect of alcohol on intestinal VILLI."" + (show)

@jamessaxo I don't believe a small amount of a substance that humans have been using since they were humans (or probably even before) can hurt you to the extent you imply. If it were true, there wouldn't be any more humans.

jamessaxo | @jamessaxo | Feb 2 11:42pm

In reply to @jeffrapp "@jamessaxo I don't believe a small amount of a substance that humans have been using since..." + (show)

Jeff. U still have not studied how our gut villi are renewed every 3 days.
but daily alcohol stops renewal and causes shortening of them all too.
Leaky gut follows. Go for it. Enjoy another lovely wine.

jeffrapp | @jeffrapp | Feb 3 12:21pm

I will spend some time researching this. Can you help me by sending some references?

johnnysneakers | @johnnysneakers | Feb 4 10:22am

In reply to @jeffrapp "@jamessaxo I don't believe a small amount of a substance that humans have been using since..." + (show)

@jeffrapp

My doctor would disagree. When i was diagnosed with PN almost 2 yea ago I drank similarily as the origional poster but stopped cold turkey. It was not as difficult as i thought it would. Has my PN stopped, no but it has not grown much! i was told by my dr it would have gotten far worse if i continued to enjoy fire water!

jeffrapp | @jeffrapp | Feb 4 11:11am

In reply to @johnnysneakers "@jeffrapp My doctor would disagree. When i was diagnosed with PN almost 2 yea ago I..." + (show)

@johnnysneakers I am glad your PN has not grown much. I also agree that going cold turkey is not that hard, at least for some people. I did it myself for 6 months, but my PN continued to progress, so I went back to my one glass of wine a day.
Which brings me to another point. Your case and mine are both one offs, or anecdotal information, meaning they don't prove anything. The "proof" comes from multiple, large studies. If you know of any which link alcohol to destruction or injury of intestinal villi as a cause of PN, I'd appreciate it if you referenced them for me, as I asked above. BTW, as far as I know, the relationship between PN and alcohol is that when used in large amounts, alcohol can interrupt the absorption of B12 and the production of intrinsic factor, and therefore be a cause of PN.

mikead63 | @mikead63 | Feb 10 10:32pm

In reply to @jeffrapp "@johnnysneakers I am glad your PN has not grown much. I also agree that going cold..." + (show)

@jeffrapp Everyone is different and no one has all the answers! I was diagnosed with IPN 2 years ago and it hasn't gotten much worse. I enjoy my wine AND martinis. I have cut back considerably on my alcohol but not given up on what I enjoy. I'm 79 and I keep myself physically fit with weight lifting and cardio on a regular basis. Physical movement and the right mix of OTC medication keeps me feeling like a 50 year old! I will not overdo alcohol as it does cause problems with my feet when I sleep.

Spreyton | @furdog | Feb 13 12:33am

In reply to @mikead63 "@jeffrapp Everyone is different and no one has all the answers! I was diagnosed with IPN..." + (show)

@mikead63
I was diagnosed with Idiopathic or Alcohol induced small fiber peripheral neuropathy in April of 2024. I used to drink about 3 drinks a night, mainly red wine. I quit cold turkey when I got the diagnosis. My symptoms were tingling toes on my left foot. For the remainder of 2024, it advanced to burning at the ball of my left foot. Then in 2025, it got considerably better / dormant. Small discomfort on my left foot when wearing socks and shoes, but able to do anything , golf, swimming, skiing, hiking.
Now all of a sudden last month I have burning in both feet so bad, I can’t walk more than 40 minutes and the nerves on my knee caps go wild when the bed sheet is drawn across them.
More tests to come but the doctor still thinks it’s progression that is non-linear.
Has anyone been prescribed Benfotiamine to address this with any success ?