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. :eek:


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!

When you say four years that makes sense because nerves heal so slowly. And if I remember from previous posts you are tall so they’ve got further to go. 😃

Did your improvement continue through about four years with regards to improving on pain/numbness/tingling in the feet? Or was it mostly improvement in motor/muscle issues?

Thanks!!!

Indeed, 6'7" :D That's the thing with PN, I don't have any motor/muscle issues. I can dance or walk and you'll never notice it. It's pure pain and some numbness in my toes. The improvement was in the pain department mostly.



And of course, there were setbacks in that early period too, as this is PN, so it's not a straight line, but the first 2 years were a massive improvement - which to this day I attribute mostly to a sustained sensible diet.

A very interesting video about gratitude, and the effects of that (and stress) to our health.


Prof. Seheult of MedCram was an incredible source of scientific and objective information during Covid, and here he looks at the effects of stress and anger on our health, using scientific studies and methods.


Rather surprising (or maybe not, given what we always talk about here), but all this can be measured.


The Science of Thankfulness and Forgiveness Clearly Explained - YouTube


Well worth the 26 minutes. :)

Wide-O,

The pain you mention massively improving in the first two years, was that the pain you had mentioned previously being around/behind the big toes?

Thanks and hope everyone is doing well.

Indeed it was. During the worst moments it felt like a) my feet were literally on fire b) someone was stabbing a stanley knife in my soles under my toes and c) someone trying to pull out my big toes with a wrench. I'm not joking. Sometimes my right toe cramped up and stood in a really weird position, as if it was broken and pushed aside.



2 years later all that really heavy stuff was gone. And last summer I accidentally did 20.000 steps in a day, and just felt tired the next day, nothing else. :)

If you don't mind me asking. What is it like now? My discomfort is mostly like part of my foot feels swollen, or like I am walking on a bunched up sock, or a painful tingle (not as bad as you described but burning sensation is a fair description). It is almost all around the ball of the foot and where the toes meet the foot. At times (although less frequent) it feels like a bad bruise. Does any of this sound familiar?

Are you on any meds? I am evaluating gabapentin. Thanks again!!!!

4139 days sober

Surgery next week and then off to Canada for a week! We'll see how the cold does on my legs :D

I cannot even imagine what you have been trough. Mine was a breeze in comparison and I just did not want to live on certain days. I am happy you have improved.

Yes, it sounds like 90% the same.



I do take Zaldiar for pain control, works pretty well. Take your time in finding out what works for you personally and what doesn't.



Thanks a lot, appreciated. :) The silver lining is that getting sober and staying that way for 10+ years feels like some kind of super power, like "oh OK, I actually CAN do hard stuff when really needed".

First off thank you again for sharing. That really goes out to everyone here. It is helpful to feel like you aren't alone.

With regards to the Zaldiar, is that as needed for say flare ups or do you take it everyday? I am hoping to find something that works but that I don't need to be on constantly. A lot of hoping these days... :)

Almost 1 year sober. 4 more days to go. No neuropathic symptoms today. I just did an incredible e-mountain bike ride of 50 kilometers. My new addiction is much better than drinking and keeps me healthy.

Awesome, congrats!

I take it every day.


I used to just take it when the pain came up, but that's basically punishing yourself. Taking a reasonable dose prevents this circular dance.



Take your time, and you will find a way to handle it.

Awesome stuff, you rock! :)

Thanks. I wonder why it is so difficult to find information on the Internet about cases when alcoholic neuropathy was cured or reduced to a very low level. I am 1 year and 7 days sober. I suffered terribly from this illness for at least 10 months. All I could read is that this state is permanent. Still now, my symptoms are so mild, that I can even enjoy sweets these days. If I do sport or work in the garden I can even eat chocolate, ice cream and get away with a very light, almost unnoticeable numbness, but nothing compared to the state I was in just 6 months ago, when my back got stiff and numb on its right side after I ate something sweet. Out of a week, 5-6 days I don't even notice much symptoms, other than some occasional muscle movements and some slight temporal numbness here and there. Nothing that freaks me out as before. My false heat senses are gone since months now, also pins and needles, false air movement sensations, waterdrops on my skin, pain in my right hand. I also sleep like never before, but I guess that is due to 0% alcohol consumption.

Also, where are you from? I am from Hungary, but I live in Costa Rica. When I got sick, I had to go home for better treatment and I spent 1 year in my country, which was nice. Now I am back and enjoy being able to function again.

To me it sounds like you "caught" it just in time, and most sensations will subside - or just be annoying x days a year.


Yes, there's only the "It's forever, go home, you are done" message out there. I don't know, I first thought it perhaps was about shame (alcohol addiction), but people get neuropathy for about 800 reasons - I think Mrs D. who used to help out here a lot once made a list of all the potential causes, on this site.


I'm from Belgium BTW, but I got the exact same treatment from my doctors until I started reading up here in the Neuropathy section, and decided to find out for myself what worked and what didn't.



Then this thread (or part 1 at least) became quite popular - as there's a lot of info in here, but it's scattered around a bit.


My ex-wife used to travel to Budapest a lot for work. Many multinational HQ's and admin backoffices are moving there (or have already done so) it seems.

Yes, I think this forum is very useful. There must be a lot people suffering from this. Whoever wants to come to Costa Rica suffering with neuropathy and wants to relax and forget this s..t, let me know. I have a house on the beach close to the jungle. Went through the same, or almost. So there is much to share.

Same here, I had to go through like 20 doctors, finally I ended up "curing" myself thanks to this source.

Budapest is beautiful.

4170 days sober!

Weather here is a rollercoaster (2F one day and 68F the next) so it was time for my annual cold. Only sinus this time, which was good, as I just had minor surgery and took a couple weeks off. We were hoping to get to Canada for Christmas but nobody in their right mind would go to Toronto when its -16C.... LOL

Well, my job ended back in December and now I have the opportunity to do what I want to do until I retire! SO excited! I have three meetings this week and and I debating some real estate flipping....hmmm.

Stay warm out there!

Alcohol Periperhal Neuropathy Question
 

Hello Everyone,

I am guessing this is the right place to make an introductory post ?


I was never officially diagnosed with PN, I went to a hospital in 2014, after being on a LONG drunken bender, a half gallon of vodka a day. My feet were cold, and they burned all the time, I was having gait problems.

Anyway, doctor told me I had alcohol neuropathy. No examination, just shrugged and said that was it.


So I went sober. I stayed sober for three years, and like a fool, got drunk again.


Each time it happens, the burning, the flaring, the sex dysfunction, and all of it comes back, but always gets better after I sober up.


So, after two and a half years of feeling great, being athletic, and having my life back,I slipped last month,

I tend to go on benders. Bad benders. I have been on one for about a month now.


It is going to sound counter-productive, but since the hospitals and treatment centers will not take me, I went to two ER rooms and told them I needed a detox, and they gave me an IV bag and let me loose on the streets at 2 am, shaking violently. I decided to reduce my way out of this.

I wait until the cold shakes and withdrawals hit, and drink enough, JUST to stop it, I wait again, force myself to time it, and wait.


I have gone from a half gallon of vodka a day, to drinking 24 tall cans a day, to drinking small small cans, about 17 a day. I am almost detoxed, but I am worried, and had a question, have other people that have had BAD relapses, had their neuropathy improve ?

While waiting and withdrawing, I keep reading page after page that says I can never get better. Page after page saying it will get worse. I know part of this is alcohol withdrawal and anxiety. But I would love to hear if people who have had continnued relapses were able to get better ?


My whole body burns off and on.


Like, I have deliberately tried to excercise while I wait , in between drinks, I deliberately take vitamin supplements, I deliberately force myself to eat (though it is hard with the withdrawals ) but I am realy afraid and alone right now. I was just wondering if anyone had feedback about it ?


I really just want to get my life back together. I realy just want to go back to being old me. I am just afraid I have done too much damage to my body and afraid of being disabled.


I was making a lot of money as a driver, had a fiance, and life was great. In just one month, it is all gone. I am sitting alone and trying to put myself back together. Any support would be appreciated

Welcome! This is the perfect place...

In my case I never stopped drinking when my PN kicked in and it took 3 months in jail for me to sober up, and I stayed sober (12 years now), so I can 't answer that question for you.

But, as you already know, staying sober is the key here and I think a little accountability may do you well. Maybe AA or Celebrate Recovery or a close sober friend to text\call when needed?

You were drinking like I was and I am SO much better now....hang in there, you can do it!

404 days sober and counting. Best decision of my life. Feel better than ever. More than 2 weeks symptom free from neuropathy, which is a blessing. Nothing was worse than that. For everyone good health! Your body's healing is incredible.

4201 days sober!

Got our first snow this morning!

Doing pretty well this month. No pain, no discomfort and no wobbly walking! Doc says no gym till March 1st so I am just walking the farm road for now. Doing side work while I get my real estate license and then who knows where this broken vessel will go!! Woohoo!

Booked a trip to Israel next January and that will be a LOT of walking....I hope I can do it!

Later all!

Hello all, glad to see you are all happy and well.
Well, I have had a few setbacks but I'm back on track. No improvement in my atrophic legs which is my main concern. Walking is difficult and most I can manage is a mile and I am always worried about falling. I wonder if one of those little contraptions like a Cubbi would be a good idea. I have a very high tolerance to pain so I can deal with those issues and I refuse medication as the constant reminder of my neuropathy keeps me sober but maybe in time when a relapse is less likely. My main issue is this horrific leg weakness. I am in a few online cat groups and no one has this issue but perhaps I am a more advanced stage and I understand that is a late stage just before wheel chair so maybe no one else is stupid enough to let it go this far without getting help.

No one here had leg weakness other than Icehouse? I am hoping that muscles can be strengthened and some of the atrophy can be associated with a sedentary life for many years vs the nerves not communicating with the brain. You think?

Yay!

Like I have said before, I don't think I will ever be "healed". I still can't run and I do get tired (just from standing) but I am so grateful I can do most activities with ease. My nerves may be permanently disconnected from the brain for all I know, but there are a couple zaps here and there....

I pushed myself today. I walked over 4 miles broken down into two different walks. I felt like I was walking with lead shoes on especially towards the end but I did it! I have a walking buddy and I have made a commitment to walk with him at least 4 days a week. except during the summer heat and then we have a pool so that will suffice for my exercise.

Someone here was dissing on Philly. Yeah I know but this is my city and despite all, it has excellent healthcare services in fact some of the best in the country. I understand University of Penn has an amazing Neurology Program and someone on another forum mentioned it and all his doctors are doing for him. I was surprised as most these doctors just throw drugs at you but these guys do initial testing and then set you up with a program and do regular rechecks to access the progress. They do not believe the condition is permanent but rather just slow in healing but improvement will be seen if you live right. Sign me up!

Feeling good and keeping the faith.

I have had leg weakness, but I stopped drinking after the first two ocassions, so it faded. I can walk now fine, I don't have it anymore. I have been through a stressful period, my neuropathy is back after a month of almost symptom free time or very mild stuff, which I could happily live with. I know it will be gone, I just need to keep sugar down and stress out of the house. Not easy all the time.

Was it me? :D

My son lives there, near Temple, and I have watched the decline of the City for years now. I used to LOVE Philadelphia....now I only go there to see the kid and get a Cheesesteak from the guy near the bell.....

Icehouse, yeah, Philly has gotten very bad. That area by Temple is especially bad. I see just last night another cop is dead and a couple years ago a friend of my son's was robbed and killed right in broad daylight while walking his little dog. They had the video and showed it on news. Wished I had never watched that. Somethings can't be unseen. The kid is very compliant, hands over his wallet and was murdered anyway. His little dog just sat by his dead body. This DA is very soft on crime and so criminals rule.
I am building up my stamina in walking. It's kinda fun with a pedometer and it has become a game of sorts. I am always trying to one up my buddy.

Oh, and I started Alpha Lipoic Acid. I have read it takes several weeks to be effective. Perhaps that is why none of these supplements seems to help? I give them only a few days and then just assume they aren't helping. I must give them more time to work.

Don't know what's going on with our weather but I find it scary. Other than a couple very cold days it has otherwise been springtime weather. I would rather it get colder than warmer.