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Old 06-27-2007, 08:23 PM   #31
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Default Shoes and PN

The topic of shoes came up so I'll continue the discussion with this fairly exhaustive posting.

This is a summary about shoes to maximize your comfort, minimize pain, and avoid damaging your feet and nerves.

1) Shoes should be roomy in the toe box, snug in the heel area, and give good support. There should be NO squeezing of your toes or the metatarsal heads (the foot just behind your toes). Be sure there is at least a thumb width between your toes and the front of the toe box. The sides where the laces insert should be parallel or slightly in, indicating that there is enough room for your instep (the middle part of your foot). You don't need an arch support. If you have flat feet, an arch support will put undue pressure on your arch, making the PN in the area worse. If you have high or medium arches, a little rise in the arch area is OK as long as it is comfortable.

2) Our feet spread with PN so expect to need wider than you used to wear. The brand you've always worn may no longer be right for you. I went from 10 1/2 D to 11 EEEE. I used to run in Asics, but no longer can wear Asics (or run).

3) Try shoes on in the afternoon when your feet are a little bigger, or whenever your feet are at their largest. When trying on the shoes, use the thickest sock you're likely to wear with that shoe. If your feet are different sizes, go for a good fit on the bigger foot. You can always add a thin insert for the smaller foot.

4) Acrylic socks are best. Acrylic doesn't compress so they give cushy comfort. Acrylic dries quickly, keeps your feet warm even if wet, and wicks moisture away. Next best are nylon/polyester blends, or wool. A LITTLE cotton in the blend is OK. AVOID COTTON SOCKS. They compress during the day, take forever to dry, and are cold when wet. When I used to run and backpack, cotton gave blisters. This is not just my opinion. It is what I learned in Sierra Club classes and is agreed to by Walking Magazine and Backpacking Magazine.

5) Fit is much more important than brand or cost. Shoes are made on a form called a last. Each brand uses their own last, so if you find a model that fits you, other models of that brand are liable to fit you. SAS, Spalding and New Balance work for me, so I don't waste my time on Florshiem or Nike (for example).

As a cost example, Tom McCann shoes in the wide widths from K-Mart work great for me as dress shoes, much better than $200 Italian shoes with a narrow toe box.

6) Walk around in the shoes at the shoe store until you are absolutely sure there are no places the shoes are tight, press, or rub.

7) Good fitting shoes should feel comfortable right away. Shoes do not break in, your feet do. To demonstrate this, put on an old pair of shoes you had to break in and that you haven't worn for a year. They will be uncomfortable, demonstrating that it was your feet that broke in, not the shoes.

8) Some brands to check out that work for me are:
- S.A.S. (San Antonio Shoes) Comfort Shoes, top rated by Walking Magazine
- New Balance, also top rated by Walking Magazine. Be aware that New Balance uses at least two different lasts depending on where they are made.
- Knapp shoes are well made and available in widths. Check the web site for where to by them.
- Again, fit is more important than brand.
- Other people have great suggestions that work for them. This is just a starting place. Be willing to try on different brands until you find what works for you.

9) Open sandals are great in warm weather. I like the kind with Velcro adjustments across the toe box and instep so they can be adjusted for socks or not. I get cheap ones from Payless Shoe Stores, Wal-Mart, and Sears. They look great, are comfortable, last a long time, are waterproof, and cost about $20 on sale. Again, fit and comfort are more important than the brand.

10) Don't go barefoot if you have PN. Imagine the pain of stepping on a stone, or hot pavement. You can seriously damage numb feet and not know it until infection sets in. Sore feet are far better than amputated feet.

11) Wear surf slippers at the beach, lake shore, or in streams.

12) I have a hard time telling if a pair of shoes fit when my feet are very sore or numb. You can tell a little by moving the shoes around to check fit, and being sure there is room in front and in the instep. If in doubt, don't buy them.

13) A good professional shoe salesperson is invaluable. Years ago I worked part time in a running shoe store. We were extensively trained and had experience in fitting shoes for individual needs. We also charged full list price.

Shoes are a tough area for us PNers. However, it is possible to get comfortable, protective, reasonably priced, and good looking shoes if you are patient. Once you find what works for you, it will be easier in the future.

Good luck.
David - Idiopathic polyneuropathy since 1993
"If you trust Google more than your doctor, than maybe it's time to switch doctors" Jadelr and Cristina Cordova, "Chasing Windmills"
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Old 08-09-2007, 09:52 PM   #32
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Default Found a couple of interesting papers on PAIN

while looking for other things...good general resources:


A little lite reading for a hot summer's nite. - j
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Old 08-20-2007, 11:13 AM   #33
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A Letter to Normals From One in Chronic Pain:

Having chronic pain means many things change, and a lot of them are invisible.

Unlike having cancer or being hurt in an accident, most people do not understand even
a little about chronic pain and its effects, and of those that think they know, many are actually

In the spirit of informing those who wish to understand:

These are the things that I would like you to understand about me before you judge me.

Please understand that being sick doesn't mean I'm not still a human being. I have to spend

most of my day in considerable pain and exhaustion, and if you visit, sometimes I probably
don't seem like much fun to be with, but I'm still me, stuck inside this body.
I still worry about school, my family, my friends, and most of the time, I'd still like to hear you
talk about yours, too.

Please understand the difference between "happy" and "healthy".

When you've got the flu, you probably feel miserable with it, but I've been sick for years.
I can't be miserable all the time. In fact, I work hard at not being miserable.
So, if you're talking to me and I sound happy, it means I'm happy. that's all.
It doesn't mean that I'm not in a lot of pain, or extremely tired, or that I'm getting better,
or any of those things. Please don't say, "Oh, you're sounding better!" or "But you look so healthy!"
I am merely coping. I am sounding happy and trying to look normal. If you want to comment on that,
you're welcome.

Please understand that being able to stand up for ten minutes doesn't necessarily mean that

I can stand up for twenty minutes, or an hour. Just because I managed to stand up for thirty minutes
yesterday doesn't mean that I can do the same today. With a lot of diseases you're either paralyzed,
or you can move. With this one, it gets more confusing everyday. It can be like a yo-yo.
I never know from day to day, how I am going to feel when I wake up. In most cases,
I never know from minute to minute. That is one of the hardest and most frustrating components of
chronic pain.

Please repeat the above paragraph substituting, "sitting", "walking", "thinking", "concentrating",

"being sociable" and so on, it applies to everything. That's what chronic pain does to you.

Please understand that chronic pain is variable. It's quite possible (for many, it's common) that

one day I am able to walk to the park and back, while the next day I'll have trouble getting to the
next room. Please don't attack me when I'm ill by saying, "But you did it before!" or
"Oh, come on, I know you can do this!" If you want me to do something, then ask if I can.
In a similar vein, I may need to cancel a previous commitment at the last minute.
If this happens, please do not take it personally. If you are able, please try to always remember
how very lucky you are, to be physically able to do all of the things that you can do.

Please understand that "getting out and doing things" does not make me feel better,

and can often make me seriously worse. You don't know what I go through or how I suffer
in my own private time. Telling me that I need to exercise, or do some things to "get my mind off of it",
may frustrate me to tears, and is not correct.
If I was capable of doing some things any or all of the time, don't you know that I would?
I am working with my doctors and I am doing what I am supposed to do.
Another statement that hurts is, "You just need to push yourself more, try harder".
Obviously, chronic pain can deal with the whole body, or be localized to specific areas.
Sometimes participating in a single activity for a short or a long period of time can cause more damage
and physical pain than you could ever imagine. Not to mention the recovery time, which can be intense.
You can't always read it on my face or in my body language. Also, chronic pain may cause
secondary depression (wouldn't you get depressed and down if you were hurting constantly for
months or years?), but it is not created by depression.

Please understand that if I say I have to sit down, lie down, stay in bed, or take these pills now,

that probably means that I do have to do it right now, it can't be put off or forgotten just because
I'm somewhere, or I'm right in the middle of doing something. Chronic pain does not forgive,
nor does it wait for anyone.

If you want to suggest a cure to me, please don't. It's not because I don't appreciate the thought,

and it's not because I don't want to get well. Lord knows that isn't true. In all likelihood,
if you've heard of it or tried it, so have I. In some cases, I have been made sicker, not better.
This can involve side effects or allergic reactions, as is the case with herbal remedies.
It also includes failure, which in and of itself can make me feel even lower.
If there were something that cured, or even helped people with my form of chronic pain,
then we'd know about it.
There is worldwide networking (both on and off the Internet) between people with chronic pain.
If something worked, we would KNOW.
It's definitely not for lack of trying. If, after reading this, you still feel the need to suggest a cure,
then so be it. I may take what you said and discuss it with my doctor.

If I seem touchy, it's probably because I am. It's not how I try to be. As a matter of fact,

I try very hard to be normal. I hope you will try to understand. I have been, and am still,
going through a lot. Chronic pain is hard for you to understand unless you have had it.
It wreaks havoc on the body and the mind. It is exhausting and exasperating.
Almost all the time, I know that I am doing my best to cope with this, and live my life to
the best of my ability. I ask you to bear with me, and accept me as I am.
I know that you cannot literally understand my situation unless you have been in my shoes,
but as much as is possible, I am asking you to try to be understanding in general.

In many ways I depend on you, people who are not sick.

I need you to visit me when I am too sick to go out.
Sometimes I need you help me with the shopping, the cooking or the cleaning. I may
need you to take me to the doctor, or to the store. You are my link to the "normalcy" of life.
You can help me to keep in touch with the parts of life that I miss and fully intend to undertake again,
just as soon as I am able.

I know that I asked a lot from you, and I do thank you for listening.

It really does mean a lot.

Bob B

Last edited by nide44; 08-20-2007 at 11:15 AM. Reason: Reference for -- A Letter to Normals From One in Chronic Pain:
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Old 08-30-2007, 08:47 PM   #34
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Default Blood sugar levels and organ damage

Ran across this link to Janet Ruhl's website - has some really good info re: blood sugar levels and organ damage.


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Old 09-19-2007, 06:44 PM   #35
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Default add one more

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Old 09-24-2007, 07:35 PM   #36
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Default One more to urge caution in diagnoses...

This article is chock full of BE AWARES, BE CAUTIOUS and APPROACH CAREFULLY's....


Two aspects strike me about this: 1] the cautions interspersed throughout the diagnositics and 2] the types of doctors and papers, 'names' if you will, that are used as references.

It might be useful tho as it incorporates a variety of neurologic and vascular etc. causes into the medical 'assessment' mix. Extra food for thought? - j
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Old 10-15-2007, 10:46 PM   #37
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Default Important Links/stickies

Hi All.

This is a link (taken from the Neuropathy Association).

Just click on the link, choose your state, and you'll be prompted from there. You just might find a neuropathy support group in your area.

I don't know how to make this a stickie, maybe one of you can do this???




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Old 10-30-2007, 11:59 AM   #38
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Lightbulb link to IVIG treatments...

Dahlek has started a thread on this with information:

All truths are easy to understand once they are discovered; the point is to discover them.-- Galileo Galilei


Weezie looking at petunias 8.25.2017

These forums are for mutual support and information sharing only. The forums are not a substitute for medical advice, diagnosis or treatment provided by a qualified health care provider. Always consult your doctor before trying anything you read here.
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Old 11-26-2007, 09:21 PM   #39
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Default New diagnostic reference site

Tho it's for CIDP and about IVIG, the whole diagnostic and assessment parts of it are key for all of us. The graphics are well, just that...clear about demeyelination and that process, and other aspects about the diagnostic decisions that COULD/SHOULD be made about treatment.


Happy reading? - j
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Old 12-08-2007, 01:35 PM   #40
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Default RE: A program to heal nerve damage and reduce PN symptoms

Absolutely excellent article!!! Thank you from the bottom of my heart! I've been diagnosed a little over 2 months with little help from Drs, fired one recently and have a new Neurologist apt this coming Monday. I am 52, and my PN is fast moving, spread to most of my body with little to no reasons for it that I know of. Very high pain. Will be pursuing toxins, immune problems, back/compression, gluten problems; I have no Diabetes. I've already started some of the vitamins you mentioned; general, folic, C, E, and not enough: Acetyl-L-Carnatine, Alpha Lopiac Acid, Fish oil. I guess I have a good start anyway. Diet could improve & excercize needs a lot of work! The emotional side is the hardest, especially as this has spread so quickly and my life is so entirely turned upside down. You have empowered me and I thank you!!! Rose Terry RMTerry@prodigy.net
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