why don't people talk about. In other words why don't we hear people talking to us about it in social situations? Could it be, because people just get on with there lives and just tolerate it? With this assumption in mind, is it possible, this disease can be managed and therefore live a production and active life. If there was huge suffering as a result of PN, (and l know there is as l am suffering too,) then PN would get the attention it deserves.
After telling people that l have PN, most have never, ever heard of it.
Make me wonder how common it is?

I just don't get it.


Sue

I think that people are more likely to accept sore feet, as perhaps due to something else. The feet are complex mechanically, and medicine has even evolved specialists to only deal with foot/ankle problems =podiatrists. A common cartoon illustration, I can recall when I was young, would be a person soaking their feet after a long day!
There is a popular remedy for this here called Johnson's foot soap!
http://www.drugstore.com/johnsons-fo...%20foot%20soap

Also I think shoe technology has changed quite a bit from the types we used to have. I even just purchased a pair with springs in the heels to help cope with my painful left foot. So now when changing shoes to a new type doesn't work people realize that inside the foot something IS happening other than wear and tear.

Discovering it is a condition called PN typically comes later.
(If it turns out to be PN).

When I was 30, and had my initial substantial problems, I didn't know it was PN then, I thought my feet and hands were reactions to a physically and emotionally stressful job.

As I expanded my knowledge base, that is when I started to learn about PN. When I was pregnant and lost most of the use of my hands... had to go to a specialist and have an EMG, that was a big wake up call for me!

PN wasn't always so common in younger people. I think we are just on a new curve with it now, since the triggers for it have expanded due to common use of damaging drugs, increased incidence of thyroid and autoimmune disease, and increased incidence of diabetes. PN was decades ago mostly a problem that elderly people got, that I saw as patients. Many PNs today are secondary therefore to another disease.

Primary PNs are not statistically that common so far. And PN is something that sneaks up on one... slowly worsening. The rapidly progressing types like GBS are dramatic however, and get a lot of attention. You will see GBS mentioned even on the TV commercials here listed as potential side effects of vaccines advertised in US. (Gardasil and Menactra).

I think people don't 'get it' to some degree, I know I didn't. My sister-in-law was type 1 diabetic and had significant neuropathy. She used to mention her feet hurting and I was clueless, I just didn't realize how painful it was based on my own experience with sore feet.

judi

That's one reason. Another is that for many/most healthy people, listening to/about suffering is an uncomfortable situation. Heck, I'm a painee, and there are times I get uncomfortable and don't want to hear about it anymore either. There are appropriate times & places for talking about it - they're called support groups. There are also inappropriate time & places, and they're called parties and other social functions. I'm sure I'll catch some flack for that position, but that's what I've learned, that's what's been written by many of us, and that's part of the stigma. Other than "Movies of the Week" (a.k.a. "Disease of the Week") you don't see a lot of mention in movies/television either. How many of the medical conditions on the index page do you hear people talking about in social situations? Maybe a few; there are probably some you've never heard of either. I know I hadn't before coming here, because they don't affect me personally (see below).

That's what we've been saying right along. Do you know what a bell curve is? Nevermind, I'll trip myself up trying to explain it that way. Let me put it another way... out of all the people who have PN (however many that is), most fall within the category of having it progress to a certain point and then stop, and they learn to manage and live with it, and get on with their active and productive lives. There are smaller groups at each end of the spectrum: At one end is a small group who reverses their PN to some extent or other, heal themselves, and you'll never hear about it (unless they posted something here or elsewhere, but as mentioned before, people who get better don't post/talk about it; it's a non-event to them). At the other end is a small minority who continue to progress, suffer worse symptoms, and become debilitated. It's this latter group who often find their way to support groups. This actually happens with a lot of other medical conditions as well - back to the index page...

Not necessarily. How much do you hear about chronic pain? If I sent you to some awareness sites about chronic pain, how many people it affects and how badly, how it is ignored by society, etc., it would blow your mind. People with PN are a small minority of those with chronic pain; most (the 3 largest #s of people) consist of lower back pain (that may or may not require surgery, but the surgery fails so often they have a name for it - Failed Back Surgery Syndrome), chronic headaches (the kind that keep people from functioning), and Fibromyalgia (another little-understood but painful condition). Chronic pain doesn't get the attention it deserves either; not the kind of attention it deserves, anyway - headlines about drug abuse and bad doctors sell more advertising time/space than those about chronic human suffering. Catastrophic events are sexy; day-to-day agony is not, but I digress...

You may, but it may take a while. Did you get it before you had PN? Do you get other conditions & diseases that don't affect you personally? Probably only if you know someone who has them or you've seen mention on some movie of the week or something. A lot of diabetics could tell you about PN, but not all diabetics (like those in my family) get it, so that's no guarantee.

I'm not saying any of this to make you feel bad or guilty; it's not about that. It's about being human. As humans, we tend to think about things that affect us personally - no matter what they are. We can't constantly be thinking or worrying about everyone else's problems; that's not healthy either. Now that you have PN, you're thinking about it a lot because it's affecting you personally. But as MrsD pointed out (and I've mentioned before) obsessing about it is not healthy for you or the people around you. Learning is knowledge, and knowledge is power, so by all means, learn all you can, do/use what you can, and get on with your life; it is too beautiful, rare, and precious to waste, not to mention the negative effect/impact it can have on those around you.

Doc

excellant post

It's good to know you are able to get on with your lives, that means so very much to me. But my goal is to be able to live with with without meds. I never want to rely on meds, l know there are always side effects.

Sue

I agree about meds. I just wish all doctors would work hard to learn how to help people early and try to heal and not just only use meds. There is no choice for many people of course. Meds are good when needed.

Talking about is at parties is not appropriate, but it's also hard to not to want to talk about it, especially when newly diagnosed. Therefore lately, l haven't wanted to socialise with anyone, as l don,t want to bore them with my PN.

At the moment that all that really interests me.

Hopefully this will change in time.

Sue