1. < Neuropathy

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.

Interested in more discussions like this? Go to the Neuropathy Support Group.

larry68 | @larry68 | Mar 15 7:16pm
In reply to @johnbishop "Hi @jeffrapp, I use the search feature on Connect quite a bit but It can be..." + (show)
@johnbishop

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.

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I have been drinking since i was 15 and now 68 with neuropathy.I could barely walk till 2 days ago and quit cold turkey.I am already getting better.I can walk and talk.I will never drink again.Started doing Cobalta 20 minutes again.I admit i drank quite a bit every day but i like walking and talking.

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larry68 | @larry68 | Mar 15 7:22pm

I am interested in knowing this answer as well.

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larry68 | @larry68 | Mar 17 9:47am
In reply to @seidholz "As a recovering alcoholic with IPN, I have not noticed much change other than my life..." + (show)
@seidholz

As a recovering alcoholic with IPN, I have not noticed much change other than my life is back in order. Still have numbness, an rare bouts of pins and needles. I have been through every test imaginable over the years including genetic and no plausible cause has been detected.
The one variable is that I use nicotine lozenges(couldn’t quit everything) and there is a suggestion that nicotine may trigger PN, but no definitive answer. Has anyone else looked into the nicotine connection?’

Jump to this post

I have not looked it up but i will be just fine in the house with everything.I step outside to have a cigarette and i can feel the nerves coming up my legs going numb with one cigarette.I just quit drinking and can walk some now btw.I wasn't able 4 days ago.

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seidholz | @seidholz | Mar 17 1:02pm

Would love to know if anyone else notices increased PN symptoms with nicotine:
I can’t find any info online

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bluesky222 | @bluesky222 | Mar 18 9:25am
In reply to @johnbishop "Hi @daverave, Welcome to Connect. This is an older discussion and I'm not sure if your..." + (show)
@johnbishop

Hi @daverave, Welcome to Connect. This is an older discussion and I'm not sure if your question was for @wilcy or @jeffrapp who started the discussion. The conclusion I came to personally was that being and alcoholic can damage nerves and cause neuropathy and since I already have neuropathy I just decided I didn't need to take any chances on making my neuropathy worse. I have no medical training or background so I'm guessing there are a lot of different factors that can play a part and moderation is probably OK as in all thing.

Have you been diagnosed with neuropathy?

Jump to this post

John, has your neuropathy continued to get worse, or are you stable (and for how many years)?My neuropathy has slowly progressed for 11 years. Four years ago I did not wear braces for drop feet. Three years ago I started wearing leg braces. Two years ago I added using a cane. Now my children think I should use a walker! Has your neuropathy continued to worsen?

Thanks!

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1 reply
Mentor
John, Volunteer Mentor | @johnbishop | Mar 18 2:30pm
In reply to @bluesky222 "John, has your neuropathy continued to get worse, or are you stable (and for how many..." + (show)
@bluesky222

John, has your neuropathy continued to get worse, or are you stable (and for how many years)?My neuropathy has slowly progressed for 11 years. Four years ago I did not wear braces for drop feet. Three years ago I started wearing leg braces. Two years ago I added using a cane. Now my children think I should use a walker! Has your neuropathy continued to worsen?

Thanks!

Jump to this post

Hi @bluesky222, I shared my neuropathy journey in another discussion here back in 2020 - https://connect.mayoclinic.org/comment/310341/. Since then I have a little more feeling in my feet but I still have the numbness and some tingling but no pain. I do feel the progression has slowed or stopped but it's really hard to tell as I have other health issues not related to the neuropathy. I'm 80 soon to be 81 and still able to walk some without a cane or a walker but if I feel my balance problems getting worse I'm not adverse to using either one. I probably wouldn't like it but it would be much better than taking a bad fall and breaking some bones 🙃 I try to do some leg strengthening daily by riding an exercise bike for 30 to 45 minutes along with some resistance training and stretches. Best suggestion I have is to keep on moving and doing what you enjoy doing.

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Spreyton | @furdog | Apr 22 7:23pm

Hello all, new to the group. I have not yet been medically diagnosed with Small Fiber Neuropathy, but I'm 80% sure I will be. I have had a bad back with degenerative back disease. I've had tingling and burning in my left foot toes, which has moved to right now. My self and the Neurosurgeons thought it was pinched nerves, had back injections over the last 9 months, but did no good and the neurosurgeon recommended Spinal Cord Stimulation. I believe it might be alcohol induced Small Fiber Neuropathy, because, barring a couple 6 month stops, I've always had 2-3 glasses of wine after work. Question for the group, how long was it from time you had tingling pain until you stopped drinking. I just stopped two weeks ago, with my own diagnosis, I will have a nerve biopsy this week to test. I'm wondering have I caught it too late ? Anyone have experience with the Spinal Column Stimulator ?

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1 reply
sbrown293 | @sbrown293 | Apr 22 9:28pm
In reply to @furdog "Hello all, new to the group. I have not yet been medically diagnosed with Small Fiber..." + (show)
@furdog

Hello all, new to the group. I have not yet been medically diagnosed with Small Fiber Neuropathy, but I'm 80% sure I will be. I have had a bad back with degenerative back disease. I've had tingling and burning in my left foot toes, which has moved to right now. My self and the Neurosurgeons thought it was pinched nerves, had back injections over the last 9 months, but did no good and the neurosurgeon recommended Spinal Cord Stimulation. I believe it might be alcohol induced Small Fiber Neuropathy, because, barring a couple 6 month stops, I've always had 2-3 glasses of wine after work. Question for the group, how long was it from time you had tingling pain until you stopped drinking. I just stopped two weeks ago, with my own diagnosis, I will have a nerve biopsy this week to test. I'm wondering have I caught it too late ? Anyone have experience with the Spinal Column Stimulator ?

Jump to this post

Welcome to the group @furdog. You’ve come to a great group for support and encouragement. My lat husband had a Spinal Column Stimulator and it was a blessing. It took a couple of adjustments to get the max relief. He was very pleased. He had one friend who had good results withe SC stimulator and 2 friends who did not get good results.

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1 reply
Spreyton | @furdog | Apr 22 10:08pm
In reply to @sbrown293 "Welcome to the group @furdog. You’ve come to a great group for support and encouragement. My..." + (show)
@sbrown293

Welcome to the group @furdog. You’ve come to a great group for support and encouragement. My lat husband had a Spinal Column Stimulator and it was a blessing. It took a couple of adjustments to get the max relief. He was very pleased. He had one friend who had good results withe SC stimulator and 2 friends who did not get good results.

Jump to this post

Thank you sooooo much for your response, did your husband have SFN or ?

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sbrown293 | @sbrown293 | Apr 23 9:44am

SFN? He had herniated discs and a history of chronic back pain.

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