Great job Icehouse! So happy for you. This is an interesting moment to post this, as I avoided providing an 8 month, 240 day report yesterday because I didn't want to discourage anyone. I have no improvement at all, actually. I do have periods where the PN is less bothersome, and I believe I am getting better, but this soon reverts to baseline or worse, and overall, I am much more numb, tingly, and tired that when I quit drinking completely last August. I was diagnosed Jan. 2013.

So you might think: Why is he posting this? Actually, it is to be encouraging, as odd as that may appear. We need to keep in mind that however well informed this thread is, we are a collection of well meaning anecdotes and no one should necessarily judge their progress or lack of it by others, but rather, take heed and learn what you can and stick to it. I am actually optimistic based on what I know about the reversal of alcoholic PN, and IceHouse has a lot more days sober than me, and I think he is a lot younger, which can't hurt in most cases. I am retiring at the end of this month, and as happy as I am about that, it also causes some stress as it is a major life change and undoubtedly contributes to my tiredness and perhaps aggravates my PN. At least I believe some think stress can do that.

So Go Icehouse!! But if you ain't Icehouse yet, you Go Too!!

Um, thanks!

For what its worth, I was near 500 days sober before I ditched my cane and really started to improve. And it was not until LAST WEEK that I was able to hike a mountain (albeit slowly) and actually do something this strenuous.

I will be 41 this summer, so I am not that far behind.

This is not an overnight thing, and there were days where I thought I would never see more improvement, but go stale.

Time, vitamins to keep the body happy, exercise in moderation and abstinence is my formula.

Keep up the optimism Newstown!!

I appreciate your post Newstown. It's your truth and I don't think it will deter or discourage anyone from their own progress.

Thank you for sharing the good the bad and the ugly that is PN.

Well I think IceHouse got the point, and all this is difficult to get straight on a forum, I didn't mean to detract from his progress, that would be silly!! I was just saying that it seems sometimes people hang in the shadows here and occasionally post, and it doesn't seem like they are making a lot of progress. I was just trying to point out that ya need to hang in there. And as IceHouse points out, he didn't even get rid of his cane until sober 500 days.

Nuances are difficult to maneuver when just exchanging written word.

Yep, this is a race where no ones wins, and no one loses. We are all in the same boat here and no matter how minuscule the improvement is, it is a good thing.

What people may gather is hope. Hope drives people to better themselves and by watching the progress of ALL of us here, it can be attained.

I get what newstown is saying, and don't see it as if he meant something negative at all.

I'm having a couple of rough weeks myself right now. Nowhere near the pain I felt in the mornings when I still drank (and could numb later on with the alcohol), but still pretty annoying.

It is what it is. It could be a setback, it could be progress. We'll see.

One thing I know is that - apart from everything else complete abstinence has brought me - that if this would have happened when I still drank, I would feel incredibly frustrated and angry with myself. That's totally ignoring how far I have come in the PN department, because it would probably had gotten much much worse by now (if I still would have been alive...)

Not trying to defend or sell anything here, I had and now again have my share of pain, but I am still so incredibly glad that I'm now at (starts up app...) 662 days sober, coming up to 2 years June 13th.

So, massively well done on day 240 too! That is proper commitment and the right way to go, even if (or especially if) you have not experienced any symptom improvement. But when you are having a rough moment, just think of how much worse it could be right now when it comes to PN alone.

We may struggle a bit from time to time, but we sure as heck are doing the right thing here.

Yes Wide O, thanks for clarifying my thinking. ;) I didn't mean to discourage anyone away from sobriety!!! I feel great. And actually, I have probably improved more than I realize because it is a slow, gradual thing and I tend to get accustomed to whatever is happening on a day to day basis. Plus, I am inpatient, whiny, spoiled, and I want my treats now!!!!

Have a great one.

Reactions to alcohol
 

So I have posted on the PN forum before and scan this thread once in awhile. You see I am a 40 year old woman who was training for a marathon 2 1/2 years ago and not a care in the world-rarely saw a doctor. Today I am sitting here in bed barely able to dress and go pick my kids up fom school.

My doctors have diagnosed me with everything from B6 toxicity, to mercury poisoning, the dreaded idiopathic PN, Sjogrens Syndrome, etc. IVig did not help, gabepentin made me feel drunk, homeopathic routes have not been effective, steroids and plaquenil for Sjogrens made me crazy, and so on. I am underweight and have been a restrictive eater for years. I also consumed about 3 glasses of wine nightly. None of my doctors seemed to think this had anything to do with my condition but I quit drinking anyway to be safe. Every once in awhile I have a little something when out celebrating but I have lost the interest in it. I was an alcohol abuser before the neuropathy .. but giving it up was not too difficult.

My hours of research online led me to anorexia neuropathy. I went to an eating disorder specialist who confirmed that I am indeed what she terms an anorexic. So I am on a plan to gain weight and it was progressing despite some refeeding syndrome issues like constipation, gas, fatigue.

I was feeling good last week and my hubby convinced me to try one drink Friday. I felt great the next day and had a drink at dinner again on Tuesday with family and friends. I felt fine Wednesday. But yesterday I felt sick to my stomach, the pain in my legs was ten times worse, non-stop diarrhea and now today the pain, fatigue and nausea are so bad I am useless and in bed.

For those of you who have tried to have a sip (or is that even possible with alcoholism?) what happens over the next few days?? Icehouse you mentioned having a beer reverts you back weeks-can you tell me what happens? I am scared that this is it and I have put all my gains in jeopardy. The pain has never been like this nor the fatigue. I could have a stomach bug on top of it but it seems too much of a coincidence??? Will this pass if it was caused by the alcohol? And if that is indeed the cause why the delayed reaction?

Btw I apologize to Mrs D who did provide evidence months ago that complete abstinence is one of the keys to healing nerves. I am always trying to test the waters it seems.

Also I hope my post did not upset any of you who have done so well staying sober for so long. It actually is hard for anyone to abstain from so many of the things that harm our bodies but in the moment we always think it won't happen to us... we will not get sik, we can quit anytime we want, etc etc. Your accomplishments in getting healthy and seeing improvements are an inspiration.

To be honest, I don't recall saying that, as I have been alcohol free since August 2, 2011 and have not "tested" the waters. BUT, what I do know from helping others like me (alcoholics) is that when we relapse the drinking problem can become worse. And, that is one of the problems. People think that time can cure alcoholism, and is a very minute percentate it can, but NOT in my case. And I dont care to try it out either :p

So, in my opinion, having one drink should not kick up the PN symptoms that you mentioned. But, we are all unique. I would try abstaining for a long period of time and see how it goes. If you don't have an issue with booze then try it again.

BUT, if you have any inkling at all that you are alcoholic then its best to leave it alone.

Good luck and keep posting here please!

Not easy. The first time I quit in Januari 2012 my symptoms improved at first and then got pretty bad after 2 months. I used that as an excuse to relapse. And yes, as long as I drank enough to go through the pain barrier, I was OK until the next morning when the pain came screaming back, worse than before. So I checked myself into rehab in June 2012 and never looked back. (nor am I going to).

It's always difficult to "diagnose" someone on the internet, only you know how much you drank, how easy it was to abstain, etc. Purely from a scientific POV, metabolizing alcohol creates all kinds of aldehydes that are pretty toxic, especially to nerves. While drinking a couple of nights in moderation might not have caused PN, nor made it "worse" clinically, it may well trigger some serious pain, I can totally see that.

Also: in many cases our fat cells are used to "store" toxins out of harms way, but if you are very skinny, you may be much more prone to the toxic effect of alcohol metabolization (not the "may"). But in the end we all are affected by alcohol in the long run.

Also: although our body does heal when we stay abstinent, serious damage can be done if we pick up again after a period of abstinence. It is well known and well documented; our body heals (slowly) but also loses it's tolerance. If I would drink - right now - the same volume as I usually did up until 2 years ago, I would go in a coma and die after a couple of hours. If you know Amy Winehouse; that's exactly how she died.

So no, while I do not think that those couple of glasses have caused any additional damage to your nerves, I do believe it is enough of a shock for your body to get thrown back into pain and discomfort. I did read your other thread, but I'm always careful not to comment if I'm not absolutely sure I can contribute something useful.

In this thread however I would say: remove the variable alcohol from the list of potential triggers, and do so for a longer time - with that I mean: at least a year. Yes, it can make you feel like you give up a lot, but don't forget that for most of us in this thread stopping alcohol intake probably meant we got our life back (warts and all).

I am sorry to read you are feeling so bad - I have been there. Tramadol can work, but the nausea is exactly what I had the first 3 weeks. Then I got used to it, but it did suppress my appetite. If you are anorexic or borderline anorexic, you might want to discuss this with your doc who might consider other pain medication (like amitryptiline that normally tends to make people gain weight, but is hit and miss when it comes to pain relief).

Important: I am not a doctor! All the above is just my experience combined with informed speculation. So please discuss this with your doc. But I can say with some authority that alcohol really should be avoided at all costs right now. It can be done, as in the end, it does very little for us, and can bring the best of us down. Hope this helps a bit?

Can I get an AMEN??

;)

Thank you-yes it does help especially the part about shocking my body by reintroducing even a small quantity of alcohol. What I don't understand is the extreme nausea and diarrhea for the past five days. It must be an unrelated stomach virus on top of the PN. I saw my GP today and that was her diagnosis-along with some laughs when I asked if it was related to the drinking. She is a family practice doctor with little in depth experience with PN so I always take those insights at face value. I still wonder if there are any out there who have had stomach virus symptoms after having two drinks over the span of a few days....

Interesting about the Tramadol. I will definitely bring it up with my neurologist and nutritionist. Perhaps because I take it as needed this was not apparent to them-plus the whole ED road is new and my neurologist still labels me as idiopathic. I was recently put on 10mg of Amitriptyline so waiting to see if it works. So far all it does is help me sleep at night.

In conclusion, the risk of alcohol being toxic to my nerves is definitely not worth it as you said. It's better to avoid it completely and have a better quality of life in the end. You and Icehouse are a testament that you can improve this condition through abstinence and I am ready to do whatever it takes!!!

Hi I'm new to the forum and have took some encouragement from what I have read here.

However I know I'm at the start of a long journey. I was diagnosed with NP two years ago and have tried to ignore it and carried on drinking as before. However I have got to the stage where I wont be able to walk soon if I don't do something!

My symptoms are

Tingling in hands and feet, severe cramp in feet up to waste, cramps and spasm in hands, severe weakness in legs and back, unable to stand any longer than a few minutes some days and muscle wastage in legs.

I have played sport all my life from Rugby to Triathlon but have allowed drink to rob me of all that with my last bike ride being 6 months ago.

I'm 53 years old so would expect to be less active but I have to change to save my life. My brother died at 53 basically from alcohol abuse so I know what's coming.

I stopped drinking 2 days ago and feel better for that but let the battle commence.

Welcome ALee!

I can relate to your story, far more than I care to admit, and we are here to help you through the hardest part of this.

You can do this!

Thank you Icehouse

Will keep u posted! I know the next few weeks are going to be hard but you guys have done it so why not me.

hi all: i've had PN (or CIDP, depending on the doc) for 15 years. idiopathic, but i drink like a fish. last night for the first night in a long time, i went without. until i got here, my plan was to stop drinking at home and only drink when i go out, which i don't do often. but i suppose even that much will be too much. so ... well, anyway. i went back through 11 pages of this thread, looking for a list of helpful vits and only came across this:
"300mg Benfotiamine, 200mg, r-Lipoc, a B complex (Jarrow's B-Right), 4000mcg Methyl B-12. Then a standard Centrum & Fish-oil."
does that sound about right for a 59 yr old guy, 170 lbs?

Thanks to everyone for all the time you have spent sharing your stories. It really helps to read all the positive things happening as a result of things we can control.

I have been diagnosed with PN as a result of alcohol abuse. I was a heavy drinker for many years. I stopped the night I went to the hospital with pancreatitis. It almost killed me. 7 days in ICU, tubes everywhere. Insane hallucinations continued almost 15 days, just before I went home. My BAC that night was .342. I carried on normal conversations at that level even with family members. My tolerance was really high. My body finally gave up. I am really doing well now except for the PN. I have hope it will be reversible and will be following the vitamin advice along with 0 alcohol. I am on 300 mg of lyrica and tramadol prn. I also take simvastatin because of a celiac artery stenosis. The doctor would like me to stay on it for now. I do take coq10 with it. My PN is getting better after just 2 months of treatment. Because of these post and the information in this forum, I have hopes it will continue to get better which is a wonderful motivator to abstain from alcohol and enjoy this new life I have.

When I reach my one year anniversary, (currently 209 days since I quit), I plan to come back and buy everyone a new car!!

mrsD is the resident "expert" on this, I hope she will chime in ;)

I recommend abstaining from alcohol if you can, but I know it's hard, real hard.

Proud of you for your 209 days! By now you have surely noticed an increased ease of staying off the liquid. It really does get easier, but there will always be triggers and lingering thoughts. You can do this!

Proud of you!

PS: I like German cars, so please do not buy me a Land Rover (I have been down that road) ;) :D

Make it a goal! I am days away from 1000 days sober (on my sons 16th birthday too, and that is what he wanted) so that is what I am DETERMINED to give him and I will do it.

Hi guys I'm nearly a week without alcohol and I thought id post as it's 5am
here in the UK and I can't sleep because of the pain in my feet and back!

I have been to 4 social events this week and one had free drinks but i managed to stay with diet coke so that's a good start for me.

However there has been no change with my symptoms. I went to see a friend play in his band earlier and I could not stand without leaning against a wall as my legs were so weak. I eventually managed to get a seat but my friends are noticing how bad I'm getting. I perform myself this evening which involves standing up for 2 hours. God only knows how I'm going to get on!

Someone posted it gets worst before it's better, I'm just hoping that's true.

I don't know how long or how much you drank before , but if it was regular /heavy I think it will take some time to get all the effects flushed out of your system.

There might be a timespan or chart somewhere online that will show how long it takes to "detox" and it may take even longer for any health issues to turn around.

But good for you , keep up on the journey to better health.
Focus on eating as healthy as you can to get as many benefits as possible going in your favor.

You will have to excuse my ignorance here but I don't know how you measure alcohol units in the US.

I would drink 3 plus bottles of wine a day.This is about 27 units a day.

3 bottles of wine here cost's £10 (6 dollars?)

This amount doesn't get me drunk and I only drink in the evening after work.

My PN decline has increased in pace recently and I have to do something about it as I feel very near to not being able to walk.

Will post again when I have done a month!

1000 days sober today. Just sayin' :D

Mega Congratulations to you Icehouse! I am very happy for you.;)

Well done Icehouse.

I guess I shouldn't ask but have you ever wavered and just had one drink?

I'm on my 10th day and so far only been tempted once but reminded myself why I'm trying to get healthy again.

Some slight improvement in feet but that could be the gabapentin I've started.

Nope. Although I have to admit it has crossed my mind many times.

When you hit rock bottom there is no where else to go but up.

Quote:
Originally Posted by linter View Post
well, anyway. i went back through 11 pages of this thread, looking for a list of helpful vits and only came across this:
"300mg Benfotiamine, 200mg, r-Lipoc, a B complex (Jarrow's B-Right), 4000mcg Methyl B-12. Then a standard Centrum & Fish-oil."
does that sound about right for a 59 yr old guy, 170 lbs?
mrsD is the resident "expert" on this, I hope she will chime in

I recommend abstaining from alcohol if you can, but I know it's hard, real hard.

xxxxxxxxxxxxxxxxxxxxxxxx

haven't had a drink in eight days now. tossed out all the booze in the house, and i don't go anywhere at night. out of sight, out of mind. my plan is to do this for at least 21 days. i feel pretty great, i must say. a ton more energy. a (somewhat) better attitude. what's not to like? well, for one thing, i'm now pretty much a shut in. hey, gots to take the bad w the good, right?

meanwhile, if ***mrsD*** reads this, i hope she will weigh in on the question above.

thanks all!

The supplements in that list will work. You may not neet 200mg of R-lipoic if you used the STABILIZED form which is newer and more soluble.

300mg benfotiamine to start daily, then you can reduce to 150mg in a couple months. The methylB12 needs to be taken on an empty stomach to be absorbed well.

But otherwise it looks good. For men Centrum Silver is a better choice...since it does not have iron in it. There are generics for this in most large pharmacies, at Sam's Club and Costco.

Congrats Icehouse!!
:)

Well done that man. 1000 days is a great milestone. :cool:

Percentage wise, we are gaining on you though! I'm at about 70% of Icehouse sobriety! OK, 68.6%.

(just kidding, doesn't work that way etc etc. ;) )

Yeah, Wide-O, I would be pretty impressed if you could "catch up"! :D

Keep up the good work Icehouse, you are a great inspiration!

1004 days sober.

I know I just posted a few days ago, but I always post on the 2nd of the month. So, this is just a formality :D

Has anyone used Tegretol? My doc had suggested it, although I've been doing okay with the vitamin route and I'm not big on using drugs if it won't help. I've tried Gabapentin to no avail.

The numbness is still very prevalent, what worries me more is how ice cold my hands and feet are still after 16 months. I'm worried I've binged myself to permanent damage...it's been very trying waking up in the morning thinking this.

I've not used it kidwonder, but I believe you posted earlier that a year ago you couldn't pick up a quarter. All I got for ya is hang in there. i get frustrated also, but the few studies I have seen available suggest you might need 2 or more years to bounce back.

"Abstract

Ten male alcoholics aged 38-72 years with clear clinical and electroneurographical signs of peripheral neuropathy were re-examined three to five years later. Conduction velocities, latencies and nerve action potential amplitudes were measured from median, peroneal and sural nerves on both occasions and the results were compared with age-matched reference values from 80 healthy men. Seven of the alcoholics showed normal or nearly normal scores in electroneurographical and clinical examination and they had all managed to stop drinking alcohol. The results suggest that the prognosis of alcoholic peripheral neuropathy is good and independent of age provided that intake of alcohol is discontinued and other causes of neuropathy (malignancy, diabetes, nerve trauma) are carefully excluded."

It excites me to read articles like this (among others) that show that Neuropathy caused by alcohol does improve. Maybe not ALL the cases, but there is enough evidence to show improvement if the criteria is met (abstinence and diet are the biggies).

Keep up the good work folks!

Aye. Although I've come a long way in the last year, I can not claim to be completely "healed". It's therefor nice to know I could still see some more improvement in the next 3 years or so. Awesome. :cool:

I am newer to this forum and have been reading lots of information on PN. I've been a wine drinker for many years and never realized the damage that sometimes nightly and often times way too much on a weekend could do over the years. I have terrible burning and pain in my feet along with numbness and a tingling sensation which is also in my fingers and hands. I was diagnosed this week with PN and give Gabapentin. After a few days at only 100mg, I had to stop it due to the side effects. My plan is to stop drinking #1. Then to also start using supplements to see if it is possible for me in time to reverse any of the damage I have done. My doctor didn't say for sure it was the alcohol, but I feel it likely is the cause. Here are the supplements I plan from reading the thread. Please chime in if I am missing something. I am not going to supplement with B12 as my B12 reading was over 1900 without supplementation.

Benfotiamine: 300 mg.
Red Yeast rice for high cholesterol: 600 mg.
Qunol Cq10: 100 mg
Multi-vitamin

I'm just starting, so I know this is not going to be easy and it's a long road to find out whether or not anything will help. There are lots of inspiring stories here. Thank you for posting your experiences!