Thanks mrsD,
I did take CoQ-10 while I was taking a statin (simvastatin) but stopped when I stopped the statin. I was on it for a year because of "celiac artery stenosis".

I'd continue with the CoQ-10...at least for a while. The new research shows statins actually kill cells (cause them to die)... so we don't know if some of those affected are the same as make your own CoQ-10 in the liver. CoQ-10 is also good for maintaining gum health. Sounds like you didn't take the statin for long...so let's hope you survive it okay.;)

Thanks, I'll start back the CoQ-10. I had read bad things about statins and I just told my doctor I was going to stop. My cholesterol was checked four months later and it was perfect. Maybe it's time to consider fish oil?

Looks like two of us that are in the "maybe" category. If you do it I will do it. :D

Hey Icehouse...Congrats on your ongoing recovery from this horrible disease. I have a couple questions for you if you don't mind. Since you said your neuropathy is virtually undetectable...has your leg strength returned to normal? I've went a few weeks sober here and there. And everything improves in those weeks except leg strength. I used to weighlift before all this started. And now when I sober up for a while and see improvement with numbness and balance...I try to resume weightlifting. But my legs never seem to regain strength. Which results in depression and relapse of binge drinking. Just looking for some hope. Thanks in advance.

Wide-O, "oily" fish like salmon, tuna, mackerel and sardines are great sources of the DHA and EPA omega-3 fatty acids - they are a regular (2-3 serves/week) part of what I eat.

The other one (ALA) is available from plant sources such as nuts and seeds.

No, but I think that will take time, lots of time.

I don't know if you read the whole thread, but I stared this journey of recovery in a wheelchair back in 2011. Then I moved up to walker for about a year, then to cane for about a year. I have only been walking on my own for about 2 years now. 4 years later and even a 3 mile hike kicks my butt and I do have trouble standing for long periods.

I think, by that phrase you mentioned, is me referring to how I walk. I still have a bit of a limp but most people would not guess that I was immobile at one point.

I am still unable to run, but that is mostly from lack of trying :)

1081 days and I think I'm still making progress. I'm starting to get cold feet. What's good about that, you'll ask? Well, it means some nerves are working correctly again, and I can sense when they are cold, and cold feet, even perfectly healthy ones, feel painful when you don't warm them, so this is a definite step forward. Especially given that I avoid socks as much as possible as they felt uncomfortable for a long time.

All remaining pain is located starting from the base of my toes. The rest of my feet and legs no longer hurt or feel weird. No stabs, no stings, mostly the feeling of stepping on a Lego block with the underside of my toes. I'd rate this a 70% improvement from the worst period of PN.

Mind you, I have been on a good diet again since February 20, and lost 10 kg over that period by just eating sensible again.

In 14 days I will be 3 years sober.

1399 days sober.

Changed my diet a bit (mostly less soda and more salad), went for another long hike in the mountains scouting out waterfalls (this one was 6 miles) and even broke into a jog by mistake on the weekend (that's a good thing!) while playing with a pitbull....so my May was a good one!

Had a dream the other night I got drunk (not sure where that came from) but I woke up with a sober mind and body and for that I am thankful.

Ha yes, the drink dream. I had two of those in the first year, but not since. In the last one my wife was actually buying the stuff for me in a shop I used to go. I don't even think I drank in that one, but I remember thinking "you can't do that to me!".

The relief you feel when you wake up and it's just a dream... :eek: I wonder if it's our addictive voice that tries to trip us up when we aren't conscious. Brrr.

Anyway, so, your jog, that wasn't a dream, right? ;)

That was as real as the keyboard in front of me! It sorta just happened and I had to stop and revel in the moment :D

Good job Icehouse - a tremendous achievement :)!

Not getting much better
 

Hello All,

I am posting on behalf of my boyfriend. If some of you don't remember, my boyfriend is the rock star fella who almost drank himself to death. He ended up with a very severe case of alcoholic neuropathy, and has been a little more than 3 months sober with one brief relapse. Although he had been heavily drinking and using cocaine for a decade, he gradually lost the use of both his hands over the last year of his drinking. In the last few months of his drinking, his walking became severely impaired to the point where he was almost in a wheelchair. In the first weeks of his sobriety, we saw so much improvement, and I was so encouraged. We were able to take long walks (though his walking was still impaired) and his energy level was much higher. However, beyond these first few weeks of improvement we haven't seen much else. I don't see his movement getting better at all. He has absolutely no muscle definition. He can still hardly use his hands. It heartbreaking to see him in so much pain. Some days he says he feels like giving up, and that he wants to die. He is discouraged to say the least.

How long does it take alcoholic neuropathy to get better? Does everyone improve with time and TLC, or do some people just never get better?

Any help would be appreciated.

God bless you.

Hello Sones - I definitely remember you - in fact, I have been checking in on both threads for an update since you first posted. I am so sorry to hear it's not getting better for your boyfriend. Has he been taking the vitamin regimen that MrsD had posted early on in this thread? I have been taking that for about a year now, and have found that it has helped with the pain, and that the numbness hasn't "extended", so to speak. However, I admit, I have good days and bad days, some I am convinced it'll never get better. Some days I am just like your boyfriend - why go on? - wishing and praying that God would just take me somehow (because I would never attempt suicide).

I think it really depends on each individual, whether it ever gets better or not, and there is no timetable. This is just me, speaking from my own personal experience, and reading the threads here, which have been VERY helpful, with a special thanks to Icehouse and MrsD. From what I understand, it can take a very long time for nerves to repair, so please tell your boyfriend to hang in there. I am hopeful that my AN will turn around eventually.

Please keep us posted and tell your boyfriend we are thinking of him and will support him in any way!

1111 days (that's decimal, not binary ;) )

3 year came and went, uneventful, which is always good. I noticed, reading alcohol related forums, that quite a few people relapse around these anniversaries. Not sure how that works, but I guess they can induce pressure?

PN still getting better. Currently have hours and sometimes days without any pain or discomfort at all. Mind you, that's still with low dose tramadol, but the ways it's going it's even becoming an option of tapering that off in the near future.

Congratulations, Wide-O! Do you still have numbness? That's a lot worse for me than the pain.

Thanks! I don't, and that's one of the things with PN, I never really had that to start with. Just the stabbing pains, burning, and the very painful cramps. I suppose it was the opposite of numbness: just touching a toe with a finger or a blanket was enough to make me jump through the ceiling.

Our cases are all slightly different: I think Icehouse mainly had problems with motor nerves, for me it was sickening 24/7 pain, for you it's numbness. I assume it depends on what type of nerves are (most?) damaged.

Interesting, I never thought of it that way, with the different nerves making different symptoms. I do sometimes have that feeling you describe --"jump though the ceiling" if something touches my feet, mainly when it's unexpected. I have 3 rambunctious dogs who sleep with me at night and if they jump onto the bed and make contact with my feet or legs - I cry out in pain. The other thing is, I guess we all have different levels of pain tolerance. I am a total wimp! :eek:

Never knew about this nerve issue and my father had 2 beers 2 weeks before he died at almost 96. Never heard anything about nerve pain issues. Maybe my mom knew and just didn't talk about it with us kids. She prayed a lot for 63 yrs.

Now my former sil passed at 55 a couple yrs ago and he drank close to his end months but what got him was cigs...

My dad never smoked, but drank all his life.

Keep it up all you in sobriety. I did some drinking for some years but have not bought any booze for years now, that feels so good...every now and then I'll have a 1/4 glass beer and V8 juice for a lift. It's refreshing and it's hot here and draught for going on 5 yrs.

Awesome job Wide-O!!!

1430 days sober.

This time next month will be 4 years clean :)

I really don't have much to report this month, so I will just raise a bottle of water to all you sober folk and keep popping the vitamins!

Just thought I'd check in, only posted a few times in the thread, but catch up on everyone's goings on every few weeks.

23 months ago, quit drinking. Since then the pain is completely gone, the numbness hung around though. Quit smoking a few months ago and oh my! What a difference! Still have numbness, but it's gotten markedly better. I can stand for longer periods of time, the strength in my legs has returned. I still have issues walking over uneven ground, I feel like I'm going to topple over and have to watch my steps, however I'm sure this is mostly from still not having a lot of feeling in my feet. Mostly sort of the "fine grained" feeling. The feeling I have in my feet is rather course, if that makes sense.

In addition I've been exercising regularly with a trainer that kicks my rear end, I've lost 30 lbs and I'm sure that's helping too. Next up to get my diet in order.

I haven't done the vitamin thing in a while other than a good B-Complex and a Multivitamin.

By far the biggest jump my recovery has taken has been when I quit smoking (and well, drinking too, since we'll that's where it all starts!).

I appreciate all your updates and love reading the thread!

That's fantastic, both of you. :highfive:

Icehouse and pbwithpn - I reckon that you both should be proud of your achievements :).

I am so happy for you all.... working so hard to improve your life.
You are all an inspiration to our members and readers here.;)

Thank you all!
 

Congratulations Icehouse on the big achievement!!!

As well as pbwithpn!

I myself have been doing well, I wouldn't say it was a relapse, although I did have a beer two weekends ago for my friend's wedding. I believe I was a week from 2 1/2 years, although I've lost count of the days of sobriety, I STILL AND WILL ALWAYS remember the days I barely could pick up a quarter and was breaking down in tears, it truly felt like yesterday. I've recovered to a nice extent over the last 2 1/2 years, but I don't think I'll ever conquer the my numbness in my hands and feet. I haven't been taking daily vitamins, for a few months, other than a multivitamin and B complex every other day or so but even without them I've felt a lot better over the years. It's truly incredible to have read all your stories on this thread and the encouragement you all have provided for me doesn't go unnoticed, hence why I still visit this forum every month or so. Life's gotten very busy and I'm still in the prime of my life, it's still a struggle everyday to live with PN and to block out negative thoughts. Personally drinking that beer at my good friend's wedding was my own choice and although I could have gone without it, I've found myself questioning balance missing out good times with friends and enjoying a beer. I know I won't allow myself to snowball anytime soon, as snowballing is my worst fear, and my urge to drink just isn't there as it use to be and although I may enjoy a drink here and there for a big occasion, I know I won't be who I was before.

All in all, I'm feeling good, and every choice I make from here on out is under my own magnify glass.

I just wanted to take the time to thank everyone here, MrsD, Icehouse, Newstown, Wide-O, Beatle, and everyone else who has encouraged me the past 2 1/2 years to stay sober and stay positive. To those who continues to fight their battle with alcohol, keep it up, I'm in your corner always. I want to keep encouraging those who are continuing their battle with alcohol abuse, and more specifically bingeing, as even though I've made a personal decision to enjoy a beer, I'm still fighting every day to keep feeling as good as I do now and the journey to recovery really is NEVER over.

I'll still be here, and I'm actually going to be back on the vitamins and the formulas and knowledge I've learned here on this forum to get me feeling even better than I do now. 2 1/2 years is a long time, but it's gotten me to feeling my best in years and I don't plan to stop feeling as good as I do now. My body and mind is sharper than ever before and I have all of you to thank for it. Truly, from the depths of my heart, thank you all, I look forward to continuing hearing about everyone's success. :)

I wonder at what stage I can say I'm "cured". I just realized I spent 6 hours on my feet trimming the hedges in the garden without much of a break. That includes standing on ladders, cleaning up etc. Although my feet did feel a bit "vulnerable" this morning (hard to explain - it's not hurting but feeling like doing anything to them will hurt), they feel totally fine now.

I think someone on this thread (Newstown?) quoted a Japanese study where most of the patients were symptom free after 5 years of sobriety, so in a way that still gives me 1 year and 10 months to further recover. Maybe it won't heal further, and this is as good as it gets, but that would be great too. It's not ideal but certainly manageable.

1144 days BTW, still continuing to watch my diet (it seems that the mainstream media cought on to "it's not fat, it's sugar" - only took them 50 years...) and still taking a daily high dose (6mg EPA/DHA combined) of high quality fish oil. Although I can't prove it, it causes a big change in how well I feel and function.

Hello! Way to go everyone! I would like to start taking supplements and need some advice. I have alcoholic neuropathy. My NCV came back that I had damage to large fibers? The doctor said the test wouldn't show small but if damage to the large showed that I also had damage to small. This is all I remember and might not make any sense. I have a lot of pain. I take 450 mg of lyrica per day and I am tired. So, I thought I would ask if anything could be recommended based on the information of my test results and cause of my neuropathy? Any help is wonderful. If I should go back and read some more that is ok too. I am enjoying a family reunion alcohol free and it's great. I had not heard the five year rule about alcoholic neuropathy but it sounds like a great goal. Also, anything recommended besides caffeine to counter the drowsiness caused by lyrica and pain medication? Thanks!

Well, I did it!
 

4 years sober today.

It was roughly about this time of day too (my mind was a little scrambled with a .37 BAC (not a typo)) but that was YEARS AGO.

Got that? Now I can say, "I quit drinking years ago".

:D

Anyway, carry on everyone....life is good.

Well done Icehouse!

Congratulations Icehouse,

I'm in my 26th year now. It has become abhorrent to me over time, don't miss it never crave it.

Dave.

GREAT job, y'all! It is truly inspiring to follow along with your progress. I can report that I am doing a little better with the numbness & stiffness. I have been on Benfotiamine and B-12 Methyl. for a little over a year now. I added R-Alpha Lipoic Acid several months ago, as well. Then my joints were starting to feel stiff (maybe because I'm getting older, not necessarily because of the neuropathy :eek:) - so MrsD recommended I take SAM-e each morning which I started about a month ago, and it seems to help. Lots of pills to take - but I don't mind as long as they are helping me.

Since it's recommended that a person takes Benfo & B-12 on an empty stomach, I take one dose around 3:00-4:00am (I always wake up around then to use the bathroom anyway), then take another dose around 8:00am and wait at least half an hour before eating anything. I started that about a month ago and I think the vitamins are "taking" to my body better that way.

I do still have an alcoholic beverage here and there, mainly on weekends. I am VERY careful about the amount I drink and the beverage I have (absolutely NOTHING sugary like wine or a margarita - I pay for it in pain the next day).

Would love to hear how the rest of you are doing - what you're taking, if it's working, how long it's been, etc. Chime in, people! :)

Oh! One more thing. Have any of you had "neuropathic itch"? Sometimes my fingers or the bottoms of my feet itch, but it feels like it's beneath the skin. There is virtually no way to "scratch" the itch - I just have to wait it out (sometimes it takes a minute, sometimes up to an hour). I recall having that feeling right at the beginning of the onset of my neuropathy; then it disappeared for several months; and now it's back again. Does that mean I am healing (like I'm on the other side of the hill)? I hope????

Been a while. Feet trouble.
 

Hello everyone! It's been too long since I have checked in, glad to see the continuing progress of so many of you. How encouraging!

I have a question: How do you all figure out how much exercise is enough and not too much? This has been frustrating to me, especially since I seem to feel better when I walk, bike, mow the yard, etc., but then (like right now) I seem to 'pay for it' at times with increased foot pain and especially numbness and overall WEIRD sensations. I get really confused and anxious about it. I don't want to make things worse, yet I want to get enough exercise. Anyone have experience with this or have thoughts?

Thanks!

I have had that Wanna, I have no idea if it means much other than these darn things seem to come and go. I don't get it very often, but at times it has been quite annoying. My experience is similar to yours. Sorry I can't add more.

I am on day 2 of trying to quit Tramadol, Wide O, wish i had a good report. I don't , I am in a lot of discomfort. I just posted about exercise before I read this and didn't mention the Tramadol cessation. I hate taking the stuff (I can get by on 100 mgs daily, so I guess I shouldn't complain too much), it makes me moody and I just hate it, but not much point in having serious foot pain to the point that quality of life really suffers. I hope it's a matter of too much exercise, we shall see. I expect you will have a better report however as your sobriety is longer. I hope so!

Oooh, I have not experienced that....and I hope I don't. :)

Heya, I'm very busy so will reply more in depth later, but one thing I wanted to say. Perhaps you already knew this but just in case: do NOT stop Tramadol cold turkey!!

Seriously, you could get the weirdest reactions if you do. Even if taken for a short while, but especially after a longer period: you have to taper down gradually. Like 50mg when you took 100, then 25mg, then with longer intervals. Process should take about 2 to 3 weeks. I'm not a doc, but I'm pretty sure that stopping abruptly can be dangerous. More later, and apologies if you already knew.

I had heard that Wide O, but wasn't really sure and the info I can find seems inconsistent. But my experience certainly confirms your post!! Thank you.

I had a small cancer scare that involved a camera where the sun doesn't shine (...), but today it turned out I'm 100% clear in that area - apart from one small and benign issue.

Not totally off topic, because that means that the only lasting damage from the alcohol madness (probably) is PN. Due to the preparation of the procedure I was not able to take the tramadol/zaldiar medication for 3 days, and together with the stress I realized I'm not ready to go without pain killers yet. Not a big issue, I have almost no side effects from them apart from a slightly lower (welcome) appetite.

Newstown, I read the full leaflet again, and while cessation isn't "dangerous" as such, heavy side effects are to be expected - as you found out.

I don't want to give medical advice (not a doc) but you might consider talking to your GP about Zaldiar or its equivalent in the US. It's a combination of low dose tramadol and paracetamol (which is under discussion, I know). While the ingredients don't work when taken apart, there is something about the combination that seems to work, for me, and for more pain patients my GP treats. She is a proponent, and does not really see a problem in taking it for the foreseeable future. Just a tip, and make sure you discuss it obviously, and do your research about paracetamol. But the lower dose (37.5mg per pill) might make you less moody?