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...

Not-so-Wide-O-anymore-O...

That's fan-freakin'-tastic. You don't make me feel bad about myself—I'm inspired ...and envious. 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! 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!