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!!!!

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!

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!