I think I'm starting to heal...
 

Although I'm not superstitious in the least, it almost feels wrong to say so. Yet, I am feeling a marked improvement that is lasting for over 10 days now.

Not only is the pain going away - and that includes days when the breakthrough pain is a lot less bad - but I am also noticing a return of some "feel" in my feet.

It is impossible to know if this will last, but I now actually have moments where I don't feel any pain at all. And where those moments were previously only to be found when I woke up, they now also happen over the day and evenings.

It's also impossible to know exactly why, but the biggest change I made to my lifestyle in the last couple of weeks is to cut down on sugar drastically. After quitting alcohol 330 days ago (yes, I'm still counting...), I drank a lot of soda - the full sugar version - and was eating a lot of sweets. I suppose that was a sort of compensation, and I don't regret doing that.

But after hearing about my high cholesterol, and learning that even people who never touch alcohol can get a fatty liver simply because of eating badly, I had decided to switch to water only, with some non-processed fruit juice mixed with water in the evenings.

Combined with the supplements - I am still sure they must be playing a role - I may be giving my nerves the optimal conditions to heal. I'm also starting to simply enjoy eating an apple instead of 2 mars bars. It doesn't feel like I'm missing out, if you know what I mean.

I may regret this post later on, but I definitely think I'm onto something here. Needless to say this is making me happy, even cautiously giddy. And yes, I'm fully aware that sugar has been mentioned quite often on this forum.

One symptom that has definitely gone away is the swollen ankles, which makes me think that circulation has improved as well.

I'm not there yet, and I may need to keep up my eating (and drinking) habits forever, but that seems a very small price to pay.

Fingers crossed that I don't regret posting this ...

REJOICE!!

I say rejoice and ENJOY those pain free moments and celebrate!!! I don't believe in jinx lol but I sure do celebrate any victory I gain, and actually, speaking positive words have an effect on every part of your body, mind, soul.

Google utube, I can't remember how to word it, but there are TONS of videos on scientific study, not religious, of the effect of positive and negative words on the molecule of water, which our bodies are 98% water. The video is amazing. They speak hate/love words, play hate/positive music and show how it literally effects the water molecules.

Anyway, CONGRATS!!

Congratulations! Keep up the good work! ;)

Wide O, I am so glad you are doing better! Taking the toxins away is SO important. I am so happy for you! It is so important to give the body what it can use to heal. I love my Soda Stream machine. It adds carbonation to my filtered water. YUM! I add lemon or lime. I love to have my smoothie every day. I add so many things to it to heal my body and prevent other problems and to help my immune system. That, supplements and other healthful foods are all important. Foods with sulfer are good. Onions, garlic, etc.

I hope you continue to improve!!!!:D

Thanks very much for the kind words. :)

Sally, I looked up that Sodastream device and I just GOTTA have it. It's relatively cheap, easy, with loads & loads of flavours, and as I like very lightly carbonated water (which for some reason is always more expensive here), this is just *ideal*.

We're also happy to live in a place where the tap water is constantly of a higher quality than any kind of bottled water, so how much better can it get! :winky:

Update: I'm still not regretting my words, and have become more confident that my sugar intake plays a very big part in my PN.

When I was diagnosed with PN, I was still drinking alcohol. I tried two times to quit, and both times I failed after about 40 to 50 days. What happened was that in the first two weeks, my PN improved dramatically. I expected that to last, but to my surprise the pain slowly came back and reached the same levels as when I was still drinking. This was very discouraging and broke my resolve to stay alcohol free.

After begging my doc for a referral to a rehab center in May last year, I successfully quit after spending 70 days there. Again, in the first weeks the PN clearly improved, and I was even able to play some sports again. Yet, by November, I was again in pain and agony, and really didn't understand what was happening. My B12 levels had been high enough using weekly and then monthly injections, I had taken a B-vitamin compound three times a day, not a drop of alcohol, and still.

I would have understood if the pain stayed at the level it was after three weeks (bearable), as the wisdom was that PN can not be cured. But I didn't understand the brutal relapse. It made no sense.

Of course, in hindsight, what I started doing when I got sober was consuming large amounts of sugar. (when I was still drinking I consumed large amounts of water for most of the day...). Somehow this doesn't show up on the blood results - my liver values became excellent - except for one thing: the high LDL levels on my last test. Higher than they had ever been while still drinking alcohol, and despite eating rather healthily (fresh food & home cooking most of the time). The only logical culprit of both my LDL levels and my continued pain was perhaps to be found in the 2 litres of high sugar soda and vast amounts of sugery snacks per day?

As soon as I stopped doing both, my pain started to subside, and, what's more, my energy level improved substantially. Also, without watching portions, but including more fiber and holding back on carbohydrates and especially sugar, I started to lose weight (this is all happening within the last 3 to 4 weeks).

As I type this, there is no burning, no zapping, no cramps. Yes, my feet feel "tired", and my toes are still a bit over-sensitive. I still have good days & bad days. But... my feet are starting to sweat again (?!). Walking around actually *reduces* that tired feeling - whereas before it only made the pain worse.

I'm not saying it's all down to the sugar. Having restored my B12, B1, and D3 levels most probably plays a big role. I might start to cut down on the other supplements like Acetyl L-Carnitine and CoQ10 once I finished those bottles, and see what that does. I will continue to use topical magnesium, but may cut back on the oral version, and instead will eat enough fiber to get it in a more "natural" way. I will also continue to take the krill (omega3), as I'm allergic to most fish, and continue with the R-lipoic acid for now.

Will report back when appropriate, but I want to thank this forum (and yes, a special mention should go out to Mrs D. ;)) for giving me the information and the will/motivation to keep on searching. I may be a very "lucky" guy in that I seem to have found my way out, but I think the service you do to all of us is absolutely invaluable.

And to the docs who just tell us "it's pain, there's no cure, live with it": please reconsider your attitude. You have no idea how much damage your opinion does to people who are already on the brink due to the excruciating pains they have to live with.

Thanks for reading. :)

I am very happy for you.... it looks like you are going to continue to improve.

There are ups and downs to PN... and also weather may trigger you still. The low pressures that come with storms remain very painful for me, even after all these years!

Keep up the good work! And thanks for the update too!

That's really great to hear, I also have taken the supplements for a few months now and they really help me so far but the key for me was to cut out the junk food low carb, low fat, no fried foods and sugar. Yes you are really on to something here I know it ! I have lost 41 lbs. so far and that kinda worries me a bit because I really don't need to lose much more tho. Sounds like you found the CURE ! I am so happy for you as I feel I am on the right path too. My pain is still very bad and these flare ups put me down for days if not a week or longer sometimes. I believe this forum saved our lives along with countless others I would imagine. Thanks to all the kind people that care about perfect strangers who need help in their darkest days. I still have miles to go but maybe I will get there one day . Peace !

It still does; we happen to have one for the last 5 days, and I can definitely feel that.

"But didn't you say you were doing better?" Sure, this may seem contradictory, but even now my nerves seem to be responding to a great many things, and doing better doesn't mean that you stop experiencing this. Pain/sensations are hard to describe, but in my case now doing a bit less better means some faint sensations of prickling - like when your foot has been asleep and wakes up from that. However: no pain worth mentioning today!

Thanks. :) I realize I left out a big part in my previous post, and that is how my suspicions about sugar were confirmed and explained.

Note: I'm NOT saying sugar causes PN! I'm saying that in my case, excessive consumption of sugar somehow prevented my body from healing. Once we have PN, we seem to be sensitive to a great many things, including those who may not cause PN directly (then again, sugar does cause diabites Type II, which can lead to PN). Allergies that seem to be benign, can become a source of great pain once you have PN.

After the LDL outcome, I started searching on the net for alternatives to statins - and because Mrs. D. warned me about fibrates - I did not start taking those. I didn't have much luck and (d'oh) searched on this forum again. That lead me to the video of Dr. Robert Lustig, made by the University of California Integrative (hmmm... I've seen that word before...;) ) Medicin : Sugar: The Bitter Truth.

It's a good 1.5 hours long, but really worth watching. On the basis of that video, I bought "Fat Chance", his most recent book (I prefer reading to videos). Not only did it make a lot of sense from a science pov, it possibly explained my own history of the last year. If you had sat next to me while I read that book, you'd have heard a lot of clicking going on in my brain. ;)

Even if you don't buy the link between PN pains and sugar (we are all different) it still is worth while viewing for all of us who struggle with high cholesterol and thus can not use statins. Reducing sugar intake, and to be clear, he means fructose, yes, even the "natural" stuff, will most definitely lower your LDL. Moreover, it will lower the bad LDL (there's more than one type).

He also managed to convince me to eat an orange instead of juicing it (yes, the fibers are important), and to start eating breakfast... For those who don't have the time to watch the video, we are not just talking about the refined sugar: we are talking about sugar that has found its way into 100% of all processed foods.

Sugar also explains my sudden (first time) outburst of gout in November last year. And trust me: gout combined with PN almost gives a new meaning to the word "pain".

I have then searched for websites/videos that (try to) debunk or oppose Dr. Lustig's findings, and I didn't find a whole lot. Yes, some say he's demonizing sugar. But the science, the biochemistry that he explains in extenso, stands.

Anyway, thanks for the kind words. :)

This news is so good. I am glad every time someone reports an improvement.
Congratulations on your improvement. Let us all hope that it continues to improve.

Cheers!

Update: yesterday, I had a day where some symptoms (feet feeling "tired") came back. I first panicked a bit, and thought about having to explain on here that it was all temporary. Then I had a word with myself, reminding me that this kind of stress was exactly what got me into trouble in the first place.

And yes, today feels a lot better again, like the war in my feet has come to an end. They actually feel comfortable right now.

I'm assuming that bad days will be part of the healing process. I was stressed for other reasons, the weather still very bad, too much coffee ...

I also started thinking more about the sudden turn of events. It somehow seemed illogical, "undeserved". I was doing the right thing before (total alcohol stop, taking science based supplements), and yet it didn't seem to change much.

I think there is a logical explanation: it happened at a moment when I had been taking these supplements for a good 4 months. At the same time, I had drastically changed my diet. A part of it was a conscious decision (remove sugar/soda from the menu), and part of it happened by accident.

See, I had a very good friend from Canada staying with me, and he is a *very* good cook. He was constantly serving me steamed vegetables, which at first tastes a bit weird ("half raw"), but after a while you start to appreciate their real taste and texture. At the same time, because I respect his cooking skills, I refused to add salt to my plate - something I usually do as an afterthought. This went on for 2 weeks, the same weeks where I started to feel the massive turnaround.

In hindsight, this all makes sense: remove sugar, eat good fiber & vitamins, reduce salt intake, only eat when we were hungry, feeling proud of being able to serve wine without feeling left out myself, endless talks with a dear friend... In other words: stress-free living.

Oh, and he used nothing but olive oil, which may play a big role as well, if I were to believe Dr. Sears (and I do).

I'm now at a stage where the "I think" can be removed from the thread title... A world is opening up for me, where I was seriously thinking of buying a wheel chair 3 months ago.

I feel so good I feel guilty, if that makes sense...

I am so happy for you!!! The nutrients and fiber are all our body has to use for healing and preventing illnesses. The only way to get them is to eat the best foods. I don't eat anything that I don't love. There are so many great ways to cook and great foods to eat. I just made a dessert with my new Yonana last night. Strawberries and banana (ice cream.) I love to experiment with healthful food, my hubby is a wonderful cook so we have fun.

Wow! How wonderful! And how wonderful that we have a vehicle to share good news with those who need inspiration.
Just keep on keepin' on!!
Steven

Thanks Sally & Steven. :) Still doing fine, and going to a party of a dear friend this evening. That's the first time in a year that I go out of the house for longer than 10 minutes or hospital...

I've lost about 5cm of waist fat (according to my belt) in 30 days, even though I'm not really doing all this to lose weight - but I obviously welcome it.

I haven't touched a soda in that time, and only drink one large glass of fresh pink grapefruit juice (1/3 juice, 2/3 sparkly water) as a "cocktail" in the evening. Next to that 3 liters of water a day. Lots of fruits, lots of greens.

Started looking around, asking friends, etc. for low carb recipes, avoiding potatoes, rice, pasta as much as possible - but not to the point where it gets silly.

I guess I'm in a positive feedback loop, as the lack of pain and the diet are giving me a big energy boost, enough to start working out - but taking it easy.

Another 2 weeks have gone, and improvement has continued. If I would have to put a percentage on it, I'd say I'm 80% cured.

Some days I still have pain, mostly mechanical. Other days, I have no pain at all.

Just back from a visit to my GP. She was amazed at the progress, but after I explained what I had done, she wasn't surprised. She has no doubts that - in my case - excess sugar played a very negative role.

We also talked about statins again, and she basically agrees with the inflammation theory. She has always been reluctant to prescribe statins:

"We don't even ask patients to lose some weight anymore, the pills seem so much easier, but they don't work. Correction: they lower cholesterol readings, but my patients still die of heart related complications, I see no change in mortality/age."

It's good to have yet another confirmation of this.

She also agrees that - given enough effort - alcoholic neuropathy can be cured.

I'll have my test results tomorrow, but my blood pressure already seemed to respond to my new "diet": it's now 12/7 (bear in mind that I still smoke). I also asked to measure insulin levels, as they can be a good indicator. Arthritis (especially in the knees) has disappeared, I lost about 10 kg in the last 2 months (which obviously makes it easier on my knees too), and my home trainer taught me that my heart rate drops from 123 to 72 in 60 seconds, which is not bad at all given my total lack of exercise in the last, um, decade. :rolleyes:

I'll keep you posted on the test results. ;)

That is just excellent! Congratulations!

Great news. Are you going to stop smoking? Then more healing can happen. I have found my PN is doing great now with the supplements, diet and since adding the Infrared dome I have at home. It is wonderful to have so many ways to heal.

The autonomic neuropathy is so very hard though. Great days and then the last two not good at all. Working hard on that.

Thanks, and yes, I still plan to stop smoking. :)

Originally that was planned for tomorrow (to celebrate one year sobriety), but my wife asked me to postpone a bit, so she could work up the courage to join me.

I think that makes sense, so we'll probably quit together in August.

That is really great news!! So happy when I hear encouraging news for anyone with PN!!

I am so happy for you Wide-O. I agree with Stacy your news gives encouragement to all here. Keep up the good work. You sound like a whole person with a new life! God Bless!

That is so true. Really inspiring to hear another success story! May you continue to heal. God bless.

Thanks all. I'm very pleased that you see it as a form of inspiration.

In the mean time my results came back, and although they are not as good as I would have liked, they motivate me even more to continue to actively seek a balanced lifestyle.

My insulin level is 13.4 mU/L (range 2.6 - 24.9), which, although it totally falls within the range, is way too high, I now understand. I have no comparison as it's the first time it was tested, but it still points at hyperinsulinemia. My GP told me to not be too disappointed, as it takes time for my "diet" to really kick in. At least I now have a benchmark to judge further progress. (and I was most probably right with cutting the sugar and the effect it had on my PN). I want to get that down to 5, so still a long way to go.

D3 had also dropped from 40.1 to 34.7. I had stopped taking D3 two weeks ago, and apparently that was too soon, so I'm back on that as well.

We'll get there in the end. ;)

That is great you are feeling better and I agree it helps with motivation to keep doing the things you can to help yourself. Some things you can't control but some you can etc.

A small update: I am now routinely working outside every day for up to 10 hours. Things like gardening, fixing the pond, painting the outside of the house... They may look small, but they are a massive improvement over where I was back in March.

My weight has gone down to... well, let's just say my wife bought me a new belt. :D I'm now down to a body fat percentage of 14% just by eating healthily. I cook most days, do the shopping etc.

The swelling in my ankles (oedema), which was quite bad in the last few years, and is normally worsened by standing a lot and by warm weather, has completely disappeared. I take from this that circulation in/to my feet has improved too. I still apply some lotion (magnesium) every evening to inspect my feet.

After 10 hours of running around I do still feel some pain, and I may take a painkiller depending on the day, but mostly I can get by without them. Most important is that as long as I keep moving/working, I am no longer bothered by my PN. In fact, I don't think about it most of the day, and it's only when I sit down for dinner that I might notice pain. However, that might also partly be normal muscle/joint pain.

I still take B12, B1, R-ALA, and biotin daily (and will restart D3 in September or October). I also take what most would consider a ridiculous dose of DHA/EPA. I won't bother you with my "diet", but what's important is that it's mostly cooked with olive oil, reduced or eliminated most starches and grains, and garlic, ginger, turmeric (all fresh) are used in abundance. I also started taking half of a baby aspirin (about 40 mg) a day.

Looking back, I might not have chosen the word "heal" in the thread title. My EMG clearly showed that there are still problems with my nerves (and those would still be classed as polyneuropathy), and this may take a long time still to heal - and it may not. I do think however that I'm doing the right things to manage vitamins/inflammation/circulation which has drastically reduced the resulting pain, so much so that I'm no longer debilitated by it.

I am very happy for you and your updates are very helpful
For others coming here to read.

Your results echo mine over the years. That is why
I donate my time here to encourage those PNers who
Can benefit from some lifestyle changes.;)

Proper diet and less sugar is always a good idea and I am glad it is working to help. My internist also has me off alcohol and liver tests have improved. My condition has not been any worse or any better with the B12 supplements, time may tell.

Another month and time for a small update. I am over the moon. Yes Mrs. D., that lifestyle... since I started to eat sensibly (cutting the sugar was the first step) I have lost 29 kg (63 pounds) in about 4 months. Weight loss was not the goal (although I thought it would help with the arthritis in the knee), it comes as a bonus benefit.

Arthritis still totally gone. PN pain is mostly absent. It occasionally becomes more prominent, but it's the sort of pain like you have walked 30 miles. And in a way, that's what I'm doing, as I'm now working in the garden/around the house 10 to 15 hours every single day. The good food gives me more energy/makes me lose weight/makes me want to be active/rince & repeat. As Stacey mentioned somewhere, the constant moving about probably improves the blood flow to the nerves, and I think that's a very good thing.

Edema: gone. Arthritis in the fingers: gone. Arthritis in the knees: gone. Current weight: 99 kg for 201 cm (coming from 128). Acid reflux: totally gone. Hair loss: stopped. Hyperventilation: 95% gone (It still happens a little bit when I'm driving my car and get worked up).

Not bad for a lifestyle change.

Again, I'm not posting all this to make you feel bad about yourself. I'm just very very lucky, and I seem to be doing the right things. My diet is mostly geared towards 1) combating inflammation and 2) to get as many good nutrients inside in a natural way. The garlic, the turmeric, the ginger... no, it will not cure PN, but the whole lifestyle change is currently making it a minor nuisance. Oh, and my skin is looking a lot healthier and smoother.

Currently still take R-ALA and B12, occasionally biotin, 50mg of aspirin, and 9 grams of EPA/DHA. Starting D3 again, and should also start magnesium again.

Oh, and needless to say: not a drop of alcohol.

Anyway, off to see my music hero* in concert, and what's more, he just sent me a message that I'm on his guest list! Sometimes life doesn't suck. ;)

* He's also the man who's book inspired me to finally get off the booze... :cool:

Not-so-Wide-O-anymore-O... :D

That's fan-freakin'-tastic. You don't make me feel bad about myself—I'm inspired ...and envious. :o I WISH I could lose that much. Sounds like the level of activity (and perhaps some genetics) make a difference.

Wishing you continued success/victory!

Doc

Thanks! :D Yes, it might be partly genetics. I sometimes thought (in hindsight) that I should have been "fatter" with the amounts of soft drinks and chocolate I was consuming. Although we did eat reasonably healthy (as much cooking at home as possible, very little junk food, olive oil), we didn't really know about the whole "fast glucose" thing that happens with potatoes, pasta, rice, white bread etc. The 29 extra kilograms didn't really look bad on me because of my length, but I can sure feel (and see) the difference.

Still, as you probably already know, there's genetics and epi-genetics. It seems possible to turn on "genes"/re-balance your hormones by eating the right stuff. I certainly have not gone "fundamentalist" on food, and still have my once a week french fries "debauchery", which did not hinder the weight loss one bit. (in fact, it made it easier to keep up)

I feel "full" very early on during meals (stomachs don't shrink, again, it's all hormones), and have learned to recognize that feeling, and stop eating (empty plate or not). No one can starve themselves thin; "eat less and exercise more" sounds logical, but it is much more complicated than that. Ghrelin, insulin, endo-canabinoids, leptin, cortisol (and others); they all play their part and work better with a balanced diet. And I know that's not just theory, as I can "feel" it.

The level of activity only could go up once a) the pain became much less and b) the food gave me energy. I don't remember who said it, but activity has never been a cure if you don't change the diet first. After a couple of weeks I just didn't get hungry between or after meals, so no snacking what so ever.

I started very very conservatively on my home-trainer (overdoing it causes inflammation too...) and that was a good choice it seems. It probably does help that I did a lot of sports as a kid/teenager/twin. I'm not sure if there is such a thing as "muscle-memory", but my body does recognize/responds to being active.

It may also have helped that it was (and still is) more about "getting rid of the pain and get healthy again" than it was/is about looking good in my bikini. ;)

So yeah, "wide-o" ... it was a name given to me by two very good friends from Scotland. I'm not sure there is an equivalent in US-English. "Thick uneducated person", something like that. ;)

Now, for other people reading this: I do not knock the "sugar binge" I had when I was just recovering from alcohol abuse. It really helped with "cravings", it made it possible to persist. I could not have done this in a million years just after I quit drinking. Quitting was the crucial part of recovery, almost the only thing that mattered, and that allowed me to start to watch my diet when I was ready for it. (about 9 months in). I enjoyed food & snacks again after I got sober (replacing the approx. 2200 calories daily from alcohol :o), and that helped staying on course.

Five months ago, I was ready to accept a wheelchair as a useful aid. I didn't really feel sad about it, it was just the way it was, until I could recover later on. Yesterday evening, I danced for 90 minutes during the show. OK, I was exhausted afterwards, and my feet were killing me, but the feeling was just incredible. :)

This forum not only helped me to find the right supplements to correct shortages, it also pointed me towards people/books that really helped. Robert Lustig, Barry Sears, Robb Wolf, Michael Pollan, Gary Taubes, Christopher Gardner (and others); they all have very useful things to say when you want to eat proper food and/or want to control PN. The science seems to be out there.

Monthly update: I'm continuing to realize that PN is something you "manage", not heal. And yes, life style choices have a very big impact.

I lost more weight (without really trying) and am now down to 212 lbs (6'7"). I can see my ribs now...

Last week I completely redecorated our main living room, which included ripping out the old floor and put in a new one, repair walls, painting in different colors, new doors, curtains, cleaning, etc...

I spent about 12 hours a day on it, and had to force myself to sit down from time to time. Yes, my feet hurt afterwards, but they (almost) don't while I'm busy. For me, being busy is absolutely therapeutic. Also: painting. I have always loved doing that. You don't need to think too much, but you still have to concentrate, and you see instant results. Love it! I sometimes catch myself with holding my tongue between my lips like a toddler. :D

My wife was away for 8 days and came back to a shiny new, modern & clean room - needless to say she appreciated that. ;) As a bonus, I now have the space (and her permission...) to install a grand piano (well, a baby grand) in that room. A dream of 4 decades coming true.

I still use the Zaldiar medication (tramadol/paracetamol combination), when needed, to manage pain - especially when I'm winding down after a day's work. So the PN is not "gone" or "healed", but it doesn't really bother me anymore. I live with it, I'm OK with it.

Like mentioned in other threads: I don't complain about it to my wife. Pain is hard to understand by others, and if I'm honest with myself, I would not want to hear me go on about it myself either! ;) I'm proud of what I achieved in the garden & the new room, and with the weight loss. My knees have to carry 70 pounds less now - which means I can get up from my bed (mattress on ground level) without having to use my arms; back in April, that took me 5 minutes, use of arms, door handle to pull at, and a *lot* of pain.

I'll be going for a blood test shortly - my doc expects me - and I'm curious about my cholesterol levels. (even though I don't put too much value in the whole cholesterol thing, but that's another story). I still take 9 grams of fish oil per day FWIW, and may slowly start to cut that back to the recommended 3 grams. B12, B1, RLA and vitD. are also still on the menu.

That it for now. :cool:

It's great to hear that lifestyle changes/carefully selected supplements can alleviate some of the symptoms of PN. It promotes hope.
(If it turns out that alcohol has played any part in my condition, I will give it up in a heartbeat..)

I have chosen to eat really healthily and exercise (mainly running), for the last 20 years or more. I have never smoked and alcohol has been my only drug. Ironically, since I have been so devastated by my recent development of symptoms, I have been eating really badly (losing a lot of weight through not eating much at all and at the moment eating things for convenience rather than nutritional value).

I'm sure you will continue to manage your symptoms effectively due to your positive attitude and maybe even find some other helpful strategies to share..

Karen

Thanks Karen. Yeah, the attitude thing works. Mind you, I'm a grumpy person normally ;) but in this case I decided to attack it head on and give depression no chance.

One thing - I know it's all new for you right now, and you are feeling miserable/shocked - it is very useful to make a difference between:

a) things that caused your PN
b) things that make PN worse or appear worse

Alcohol might not have played any role in your case in the causation of PN (a)), but once you do have PN, then it becomes something to avoid or be very careful with. Our nerves are very sensitive, and the aldehydes that are formed when metabolizing alcohol often cause the pain to flare.(b))

There are many examples of this. Nobody gets PN from eating hot peppers (a)) (they are actually very healthy...), but some people got extremely sensitive to eating them once they have PN.(b))

It's an important distinction, and not always fully understood.

Also: try reading - when you feel up to it -the cases of the other PN sufferers here. I learned a great deal from doing that, with some really useful tips both on things to try and things to avoid. Some people - like those with CMT - do not have very good prospects (right now) no matter what they do, where others do report serious improvements, or find a balance in how to live/manage pain. It's not a one-size-fits-all condition, and sometimes small interventions (like magnesium/epsom salts etc) can make a huge difference.

Good luck, keep on reading, don't lose hope. :)

Thank you Wide-O.

That is a good way of putting it. Also I'd like to add that as we age, our metabolisms do change. We become more sensitive to LOW blood sugars (and this can be a cause of paresthesias for people who eat too many carbs and swing, or who don't eat at all
or properly due to bad habits, or other issues).

Our nerves are designed as a warning system to alert us to something in the environment that is bad for us. Unfortunately, we don't get education about this, and may continue with something that is damaging and not realize it. Eventually, something does give, and it might take time to manifest. By then the person has no clue as to the real trigger. (toxins, drugs, poor eating habits, vitamin deficiencies, vaccines, viruses and infections, excessive or strenuous exercise etc). The real culprit is hidden. And until the nerves are damaged enough, they remain silent. Damage could have been creeping up slowly and only become obvious once a certain threshold has been reached.

It is also to be expected that with "age" things are going to slow down, or no longer be as responsive as when we were younger.
The body repairs at a slower rate with age, and the immune system changes, Metabolism changes, oxygen saturation may decline with reduced cardiac and lung functions, kidneys may not filter as efficiently, etc. Circulation typically changes, with feet and hands getting less and less. PN USED to be a medical problem only with the elderly. But as we see here from posters who come to NeuroTalk, the age of incidence is going down.

So I think of PN as a doorbell or fire alarm type thing. It alerts us to do something and change something. The hereditary types, are slow genetic errors, that we don't have the means to change yet. But even those have triggers, that we are slowly discovering.
Hence their "drugs to avoid" lists for CMT patients.

I personally find that sudden dips in barometric pressure (weather) create many painful flares for me. It is something I have always had to endure and live with! ;)

I had another blood panel done last week, and the results are in. I'm not exaggerating when I say the doc was a bit surprised.

We had already seen my blood pressure in the 110 over 70 range (coming from 160 over 100 some time ago) and a resting heart rate of 52.

My B12 (after not taking any supplements for a few weeks) was 604, which means I can probably get by on a 1000mcg/day maintenance dose. D3 however, despite taking 25,000 IU every 2 weeks or so (but not in the 4 weeks before the test), was only 32. There is no doubt left I really need to take that every week for the rest of my life.

The fun part starts at cholesterol levels. She's convinced that a big part of those numbers are hereditary, and that changes in diet are often slow to show in the blood. Now, bear in mind that I don't think the numbers are all that important when it comes to heart disease, but we were still both pleasantly surprised. (Previous results from 4/2013)

Total CHL: 227 (was 283)
HDL: 45 (was 38)
LDL : 159 (was 192)

And the most spectacular: triglycerides: 86 (was 259!)

She expects these numbers to improve even further over the next year, and clearly sees that the diet/lifestyle is working in every way. I'm now at a stable 94kg (-34), but will keep up what is mostly a Zone/paleo type of diet. More important for PN sufferers: no statins!

All the other tests were perfect (kidney, liver) and even Ferritine (I was once suspected of having hemochromatosis) had dropped from 900 to 500.

The PN is continuing to improve, but, and this is not unexpected, there is some numbness in the feet that has replaced the pains. I can live with that - everything is better than that horrible pain, and it doesn't seem to affect my balance.

Very pleased. :)

Yes, you are doing a great job! I have to commend you on your open mind and willingness to tackle this difficult task of modifying your diet and lifestyle.

I have discovered over the many years I have been online, that changing eating habits is supremely difficult for most people to try.
The "comfort foods" are very important to people under stress and also have nostalgic links to the past. So giving them up partially or totally is very difficult.

There is a link to elevated cholesterol, also that involves sugar and alcohol. (fructose metabolism) So reducing these greatly may be one reason your numbers have improved so much.

So we are very lucky to have you here, sharing your experiences and successes. I for one want to thank you for posting here!;)

Thanks. It's nice posting here. As you know I feel I'm in debt to this forum; if there is any better resource out there when it comes to PN I most certainly don't know it.

Alcohol... yes. Ironically, my cholesterol levels had gone up 9 months after a total stop. So I suspect this is mostly - as you know - down to the sugar. (and the rest of the diet)

Now I haven't given up on it totally: I still use it in my espresso (my current "addiction"), and I'm not ready yet to switch to stevia etc. I did try it, and, well, it will take a long time to get used to, and as dr. Lustig states: we don't yet know what it does long term.

But: I know exactly how much sugar I consume. At this rate it will be about 15 kg per year. That's still a lot, but it's also a lot less than previously. See, the trick is now to be able to keep it up without having the feeling I had to give up everything - so sugar in my espresso it is.

Needless to say: if the pain ever comes back it's the first thing to go, no doubt about it.

Also: I'm pretty sure the high dose omega 3 daily works its little wonders, and that's also something I will never give up.

Pain is a good motivator for lifestyle changes (for me) it seems. ;)

I quit smoking last Sunday.

From 80 cigarettes/day to 0.

I'm slightly ashamed to say that, even after 4 days, it has a very big impact on my PN pain levels. I have not had so little pain since the PN started 4 years ago.

This may sound ridiculous, but earlier I was able to jump up & down in my shoes without feeling any pain.

Please no "we said so's", this is not easy at all, and in some ways harder than quitting alcohol. Maybe because I have been doing it for 40 years now.

Anyway, another addiction kicked to the curb. There's no going back.

Congratulations! I know it is difficult. So you are an inspiration
to all our posters here! Maybe in a small way that can make up for some of the difficulty you are experiencing.

Keep up the great work, and keep us up to date with your
very interesting and helpful posts, too.;)

That is soooo awesome!! :hug:

Keep up the great work, you are an inspiration to many people!! And never listen to I told you so's...waste of time. I know I just have to keep on trying, when we stumble, or fall, it's never too late to get back up and start again. I fail with my eating habits but what good is I told you so?? none. I just start over the next day, clean slate.

Congratulations, I'm so happy for you!

Congratulations!! Quitting smoking is so hard. I've been working on my son for a while now. My husband smoked for 30 years and quit. It was so hard for him.
I'm proud of you and you should be proud of you too!!!