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!!!