Thanks! 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 ), 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.

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.

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!