Does that improvement even four years later include improvement in regards to pain/numbness/tingling or are those gains exclusively related more to muscle issues.

Again thanks all for answering these questions. Very helpful to have a group to talk to that’s been through or is going through this.

I never had pain.
My numbness was almost completely gone by the time I ditched the cane.

For me it's all muscle weakness in my legs and a lack of balance. I work out 2-3 days a week too...

I am still fairly new here, and have been alcohol free for over a year. Roughly sixteen months, to be exact.

I do still have the pain flare ups. Outside of a couple months post covid, I do feel the flares aren’t as bad as when I finally made the probable alcohol connection last summer, and stopped drinking completely.

Unfortunately I have an additional variable of an antibiotic reaction that can cause neuropathy, so I do think the two factors have worked together as root causes. Last fall I finally had a positive confirmation via a skin punch biopsy for SFN. The typical EMG/NCV tests throughout many years always came back negative.

Hopefully that at least gives you some additional feedback, too.

Thanks for the response!!!

Are your symptoms primarily in the feet. If so where and how do they manifest (eg numbness, tingling, pain, etc…)?

How did you make the connection of the antibiotic? And is it something you continue to have to take?

Thanks again all. Great community. Very happy to have found it.

First, you are absolutely right that this is a great community. Everyone is very helpful with questions and very supportive.

It was a one time deal on the antibiotic. An orthopedic doctor helped me make the connection. I do think that is the primary cause of my SFN, but I do think drinking some after taking it made my neuropathy worse. I probably didn’t drink enough where that alone would have caused the SFN, but a weakened nervous system finally relented, especially with a little higher consumption during our covid “stay home” recommendations.

I have never had much numbness/tingling. For me, it’s more muscle weakness/pain. It’s more generalized, and feels like overuse when it happens. Fairly random on timing. Luckily to this point, they always subside. And usually don’t last “real long,” but they are frustrating as I go from feeling fairly normal, to suddenly not for stretches of time.

I prefer open shoes (slippers) in house, as I don't want to feel pressure.


My improvements ended after about 4 years too, but my "mental game" in dealing with it still keeps improving if that makes sense.


OTOH I went to a music festival a few months back, and apparently did 25.000 steps in one day/evening/night). No problem the next day.


The PN... It's there, I got it. "Deal with it dude" is what I tell myself (well, a condensed version of it). The less you fight it and concentrate doing doing fun stuff, the better you feel. So in that sense I am still improving.

This could actually make sense. I have had tinnitus since my late 20s and I am 52 now. It was possibly caused by a swimming pool infection. First, I could barely live with it. It distubed me so much that I could only take it in relatively noisy situations or under the shower practically. Then it improved a little bit and it is still there, but it does not affect me anymore 90+% of the time as my brain learned to turn it off so I refused all medical treatment and I just let it be. When I am in complete silence it even relaxes me and it almost never peaks like before. Of course I avoid noisy concerts and I use earplugs when I must go to a loud place, like a cinema a musical performances sometimes. Even during those ocassions I can leave my ears unplugged, my tinnitus peaks the other day, but clams down the next.

Before my neuropathy started I had Hepatitis E and also COVID, so that made a rough combination as Hepa E can also cuase neuropathy. My symptoms got from bad to worse when I stopped drinking alltoghether late last year, but then slowly improved. I had mayor setbacks and I had to resort to Xanax in those periods. I finally figured out that the worsening can be caused by stress, climatic changes, diet especially sugar intake.

I am more or less fine since a few months now, I can even eat some sugar. Yesterday I overdid Nutella, so now I have spasms and some numbness returned, but I know they will be gone soon or when I make some excersize and burn the sugar. So I don't freak out, I just don't do sugar until it is gone.

So setbacks are normal and also if you don't freak out that must help too. My symptoms are much milder now when they return. Gone are the days of needles and pins, pain and rainy days inside my room or in windy climate. That was pure nigthtmare. There is some ocassional numbness, but lasts a few hours only after a I sin with a cake or two. It will improve I am sure.

The body is the best healer, so I am sure you will be back on track too if you keep up with the good diet, exact vitamin intakes, excersize, sleep and no stress lifestyle. Please report on your condition!

Yeah these flare ups make it really hard to understand where things are. I am surprised that the nerves could have such an immediate reaction to ingesting something (alcohol, sugar, etc...) but reading through the posts it seems that may very well be the case.

I guess all my understanding on the matter had to do with insufficient signals and that I had reduced some of the signaling capacity/clarity by drinking over an extended period of time. And that explicitly the reduction had to do with chemically severing the fibers.

In my case I do not have much, if any, large fiber loss. My muscles appear relatively unaffected. They do seem visually smaller/atrophied, but that could be due to the weight loss (I dropped approximately 15-20 pounds). In any case the affected nerves appear to be the unmyelinated C-nerves which transmit feeling (e.g. pain, numbness, tingling). Not the myelinated fibers that tend to control muscle contraction and whose diminishment would show on a nerve conduction test (mine was "normal").

This. So much.



It should be a disclaimer on every post about PN.



FWIW, I also have tinnitus since 2004. Same mechanism, isn't it? The last 2 years were a lot worse as medication (SSRI ...) turned it from "normal" tinnitus into full blown hyperacusis. Normal daily sounds drove me crazy at first, music was a no-no. For some reason I had an awesome month, and guess what... back to listening to music at normal volume etc. The power of the mind ...



FWIW, Covid has neuropathy as one of its many possible side effects (as it's a bloodclotting/arterial lining disease at first, preventing the much needed nutrition (B12 etc) to small fibre nerves first. (this last point is speculation on my part, but it would make sense.


Flare ups are very confusing - they make you think no progress was made, but if you really look back (sometimes taking notes every day or every few days helps), you will see you have come a long way.

It is just a pitty doctors did not tell me all I have learned in the past year experimenting on my body and reading posts here. They did not care or have a clue, they just told me, go home, it will improve or not. Have patience! Great. When you have to live on Xanax that is a fine sentence to hear.

Sounds worse than mine. I can listen to music, but I figured out that certain speaker systems that go below a frequency lever worsen my tinnitus. I bought myself a high end system 20 years ago and had to sell it, as my tinnitus turned unbearable. So now I use a small JBL speaker for my home cinema and it is just fine. Also some earphones are too much, so I just use the plug in versions and that's it. I don't feel I loose anything. I just adapt to the situations and no worries.

So I had the worst cocktail of neuropathy inducing beasts (COVID, Hepatitis E, alcohol). I am getting better, so there is light at the end of the tunnel.

I try to take neuropathy as belssing not a curse. I know it sounds crazy. Since I know it is stress sensitive. I try to avoid stress at all cost. Even if I am in a stressful situation i tought myself to calm down quickly and go on with life. In the long run nobody died of neuropathy, but you can die of stress. Same nobody dies of a good diet even when forced. Low sugar intake helps me to keep my body in shape. Also I do much more exercise as I figured it helps keep it under control. Yesterday after I sinned with Nutella, I went for a 60kms ride on an eMTB, the whole day was clean afterwards and during the ride. When there is no neuropathy, nothing can destroy my mood

Exactly!