Small fiber peripheral neuropathy and alcohol

Posted by jeffrapp @jeffrapp, Thu, Jun 6 5:08pm

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.

Hi @jeffrapp, I use the search feature on Connect quite a bit but It can be challenging at times trying to find specific information at times. I did start a discussion as a tip on how to use the search function on Connect. Hopefully it will help you and other members find and connect with other members with similar symptoms. Here's a link to the discussion:

> Groups > Just Want to Talk > Search – It can help you!
https://connect.mayoclinic.org/discussion/search-it-can-help-you/

Your question on alcohol is an interesting question. I was always a moderate user of alcohol in my younger years. After I was diagnosed with small fiber PN and found out alcohol can make it worse, I quit even the moderate drinking which was one or two drinks a couple of times a week also. My thinking was if alcohol can induce PN and I already have it then why would I want to keep drinking it. I don't really think there has been any studies on occasional alcohol uses affect on neuropathy but I'm not sure. There is some good evidence on it's relationship to neuropathy though. If I didn't have neuropathy I would still be an occassional user of alcohol – I do miss a cold beer on a hot summer day and an occasional glass of wine with dinner. It's one of those out of sight, out of mind things for me.

Understanding and treating alcoholic neuropathy
https://www.medicalnewstoday.com/articles/321858.php

Alcoholic Polyneuropathy Issues & Treatment
https://www.alcohol.org/comorbid/polyneuropathy/

Foundation for Peripheral Neuropathy
Alcohol — Alcohol can have a toxic effect on nerve tissue, and alcohol abuse is a frequent cause of neuropathy….
https://www.foundationforpn.org/what-is-peripheral-neuropathy/causes/alcohol/

There is another similar discussion to yours that you might want to read through but it is not very big and has not had any recent posts.

> Groups > Neuropathy > moderate use of alcohol
https://connect.mayoclinic.org/discussion/moderate-use-of-alcohol/

@kiowajack @dutchman09 @pfbacon @maryy @ndttech @ruthanderson @mlmcg may be able to offer some thoughts on the moderate use of alcohol and neuropathy.

Liked by jeffrapp

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I was diagnosed 15 months ago with idiopathic SFN which came on suddenly. I would drink 1-2 glasses of wine/month up until then and martinis when I was much younger so no connection there.Now 1 glass of wine will cause the neuropathy in my feet to be unbearable at night so I no longer imbibe at all. I do miss it but not the pain. I am hoping to keep my SFN symptoms from progressing but don’t know if it is reversible. I exercise, walk, do treadmill, eat healthy and take R-ALA plus gabapentin for pain. I hope you can continue your drinking since it helps you and you enjoy it. Best and Cheers!

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I too just joined the forum, recently diagnosed w poly neuropathy(6 months ago) possibly Parsonage Turner syndrome and I have been a wine drinker for many years. I have been honest with my medical team and chose to drastically limit my drinking(yes, it eases my pain) in an effort to improve my overall well-being especially this painful neuropathy. No improvement in my pain but I do feel better in general. I've had every blood and urine test imaginable all negative so I'm going to get a ekg and MRI of my brain later this month to rule out any causes from that end.

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@kimchi19

I too just joined the forum, recently diagnosed w poly neuropathy(6 months ago) possibly Parsonage Turner syndrome and I have been a wine drinker for many years. I have been honest with my medical team and chose to drastically limit my drinking(yes, it eases my pain) in an effort to improve my overall well-being especially this painful neuropathy. No improvement in my pain but I do feel better in general. I've had every blood and urine test imaginable all negative so I'm going to get a ekg and MRI of my brain later this month to rule out any causes from that end.

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Hello@kimchi19, and welcome to the forum.
I'm a little confused by your post, in that you first said that limiting your drinking eases your pain, and then said that there is no improvement in your pain.
Believe me, I certainly understand how difficult it is to sort out the many variables and causes of pain in this condition.
I'm trying to determine whether or not drinking has any effect on my PN. As I said above, I stopped completely for several months, yet the condition progressed and got worse, so I presumed (possibly incorrectly) that the drinking had nothing to do with it, and went back to drinking (but more moderately). Now, I don't notice whether the drinking has any immediate effect or not. You seem to indicate that it does. Is this correct?
BTW, have you had a skin biopsy and EMG/NCS? Those are probably the definitive tests in making the diagnosis of what form of PN you have.

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I will weigh in here, take it or leave it. My neurologist said 1-2 drinks a day is fine. A chiropractor ( tired very briefly) said he felt no correlation between alcohol and PN. My research has led me to believe heavy daily drinking for years affects vitamin B levels and that can definitely lead to PN, plus poor nutrition compounds it as most calories would be alcohol! At times I feel Guilty thinking I may have caused it – many years of social drinking on weekends only, then 15 years or so of rarely drinking as I was pregnant or raising kids, then amped up a bit during my last years as a teacher. Retired now and do enjoy a few maybe 4-5 times a week, sometimes less. But I do not see a direct correlation with that particular day, nor when I had zero for 10 days.
So who knows? Kinda like the 2 pack a day smoker who never gets a related illness and lives to 95!

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Hi wisflog, and thanks for your answer. I have had nearly the same advice from some of my MD's, but not all.
I believe that you are correct about the relationship between drinking and nutritional deficiency of B vitamins, particularly B1 (thiamine). However, there appears to be another form of PN caused by alcohol separate from the form related to vitamin deficiency, which is the direct toxic effect of alcohol on nerves. For example, read this paper: https://onlinelibrary.wiley.com/doi/abs/10.1002/ana.10550.
My quest is to find out what amount of alcohol is "safe". This probably seems silly to most of you, but being 74y/o, and finding many of my previous pleasures disappearing (some as a result of the PN, and some as the result of age), I'd hate to give up my evening martini if it makes no difference to my health (like your 95 y/o smoker.

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@jeffrapp

Hi wisflog, and thanks for your answer. I have had nearly the same advice from some of my MD's, but not all.
I believe that you are correct about the relationship between drinking and nutritional deficiency of B vitamins, particularly B1 (thiamine). However, there appears to be another form of PN caused by alcohol separate from the form related to vitamin deficiency, which is the direct toxic effect of alcohol on nerves. For example, read this paper: https://onlinelibrary.wiley.com/doi/abs/10.1002/ana.10550.
My quest is to find out what amount of alcohol is "safe". This probably seems silly to most of you, but being 74y/o, and finding many of my previous pleasures disappearing (some as a result of the PN, and some as the result of age), I'd hate to give up my evening martini if it makes no difference to my health (like your 95 y/o smoker.

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I hear ya’, retired a year ago, currently 64, ready to have fun and travel and spend my hard earned savings. BUT the daily woes and uncertainties leave me depressed and bored! Thanks for the link, I will read that. Yeah we don’t know for sure what’s considered heavy drinking, and I too want to know what is considered 'safe'. My six sisters and I all like to drink, laugh and enjoy ourselves now that kids are grown and working is in the past, ok I digress…

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@jeffrapp

Hello@kimchi19, and welcome to the forum.
I'm a little confused by your post, in that you first said that limiting your drinking eases your pain, and then said that there is no improvement in your pain.
Believe me, I certainly understand how difficult it is to sort out the many variables and causes of pain in this condition.
I'm trying to determine whether or not drinking has any effect on my PN. As I said above, I stopped completely for several months, yet the condition progressed and got worse, so I presumed (possibly incorrectly) that the drinking had nothing to do with it, and went back to drinking (but more moderately). Now, I don't notice whether the drinking has any immediate effect or not. You seem to indicate that it does. Is this correct?
BTW, have you had a skin biopsy and EMG/NCS? Those are probably the definitive tests in making the diagnosis of what form of PN you have.

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My mistake. The wine was/is the only thing that helps my pain! I decided in order to rule out alcohol neuropathy, I need to probably quit drinking but I chose to refrain from wine M-F and drink only on weekends more moderately. I've had 3 NCS in 3 different states by 3 different neurologists 2 of whom are leaning toward Parsonage Turner the other Guillian Barre. I have not had a skin biopsy.

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I don't have any scientific data or studies to answer your question but I can say that I believe doctors are over reacting about alcohol and its affects on the body. When I mention heavy drinkers who have zero issues the doctors call this "anecdotal" which to me says they can't answer the question. If heavy drinkers or alcoholics were at such a risk they all would be dead or at least have severe medical issues. However, I have never found one that did. Also I had input from two medical coroners who said that the arteries and veins of alcoholics were like "those of a new born baby." Very supple and elastic. I'm older than you and still like to drink as I enjoy it just like I enjoy eating all foods. One common comment that I read about relative to nerve pain is the effect of sugar on nerves. Don't know how true this is but it apparently slows down the healing of a damaged nerve.

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Thanks for the reply, @bkruppa. I too cannot find any good studies linking PN to a specific amount of alcohol. I have, however, found ones like this https://www.ncbi.nlm.nih.gov/pubmed?term=7826275, which seems to link PN to some amount of alcohol, independent of poor diet. Another more comprehensive paper is https://link.springer.com/article/10.1007%2Fs00415-018-9123-1, which also links PN to alcohol. Neither seems to indicate how much is too much.
It appears to be true that alcohol can be a nerve poison in some amounts in some people. The details appear to be lacking.

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@jeffrapp

Thanks for the reply, @bkruppa. I too cannot find any good studies linking PN to a specific amount of alcohol. I have, however, found ones like this https://www.ncbi.nlm.nih.gov/pubmed?term=7826275, which seems to link PN to some amount of alcohol, independent of poor diet. Another more comprehensive paper is https://link.springer.com/article/10.1007%2Fs00415-018-9123-1, which also links PN to alcohol. Neither seems to indicate how much is too much.
It appears to be true that alcohol can be a nerve poison in some amounts in some people. The details appear to be lacking.

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The problem that I have with most studies is that they result in "guilt by association" conclusions rather than scientific analysis of why a condition occurs. And if there are outlying cases that don't fit the main conclusion they call it "anecdotal" which to me further supports the fact that the relationships between something and a result is unknown. There are way too many human variables in these mass testings to produce reliable results (in my opinion). Furthermore too many conclusions result in large percentage changes of a really insignificant number in the first place so the result is still insignificant.

I'm sure you can find reports/people who have increased nerve pain when using alcohol as well as finding people who don't have nerve pain. The problem is you don't know where you fit in this picture because while you know the benefits of a drink you don't know the risks involved and I doubt anyone really knows.. This is an engineer's perspective.:):).

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@wilcy

Diagnosed with spinal stenosis! Neuropathy in feet and moving to fingers! Had back surgery 10 months ago! Can’t walk more that 100 feet before having to sit! Had shots, prescriptions etc! Have started vaping with medical marijuana! Nothing so far works except alcohol! Will this make symptoms worse? Tks!

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Hi @wilcy, I have small fiber peripheral neuropathy and I avoid alcohol. There is another discussion where you can meet other members discussing alcohol and neuroopathy. I'm tagging our moderator @ethanmcconkey to see if we should move your post to the following discussion:

> Groups > Neuropathy > Small fiber peripheral neuropathy and alcohol
https://connect.mayoclinic.org/discussion/small-fiber-peripheral-neuropathy-and-alcohol/

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Diagnosed with spinal stenosis! Neuropathy in feet and moving to fingers! Had back surgery 10 months ago! Can’t walk more that 100 feet before having to sit! Had shots, prescriptions etc! Have started vaping with medical marijuana! Nothing so far works except alcohol! Will this make symptoms worse? Tks!

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Hi @wilcy, you may have noticed I moved your post to this discussion on neuropathy and alcohol so that you can learn and connect from others with similar experiences. Simply click VIEW & REPLY in your email notification to see your post.

I'd like to thank @johnbishop for responding and also tag fellow Connect members @bkruppa and @kimchi19 as they may be able to offer you support.

Have you asked your doctor about alcohol consumption?

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Am same as you except I have spinal stenosis! Enjoy sitting on porch in afternoon and having couple of drinks! Also the only thing bringing relief from neuropathy is the alcohol!

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