[Jesse M]

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Man, I really hate to even write this, because I hate the pain from PN so much. But I feel it will help others, including me in distinguishing certain pains from other ailments and also to relax some and not panic when you experience a new type of pain.

Describing the pains are in itself hard to do. I basically feel,them in my fingers, hands, toes and feet. Mostly for me it has subsided to only about 3 types now - pins and needles -or stinging sensations, deep, dull aches in the bone or muscle, or a kind of odd tearing pains at my toes or finger tips. Also, sometimes, I get a bloating/numb feeling in my fingers or toes, mostly toes though.

Recently, I have been having a stinging pain felt in the middle of my back, as if being stung by a bee. Around that area, it is all numb - except for the reoccurring stinging sensation. There is no rash or other abnormal thing that I can see.

This has been going on for the last 3 days, the 1st day the worst; the second almost gone, and then now, it seems to have come back in somewhat frequent pulsating episodes.

Point being, I was getting scared I had shingles, or fibromyalgia, or even MS.

The thing is, PN is very similar symptomatically to these since it is a damaged nerve disease, so its hard to decipher.

I personally feel that it's just the "flavor-of-Pain" of the week type of thing - as I often have new and frightening pain sensations for a week or so, before they fade out and turn into something else.

I have had many test done to rule out such things already, but sometimes I get panicked, and think" well, did I really get the right test for MS, or I'll get the question - "Does having neuropathy make me more susceptible to getting things like Shingles, MS, or something else?"

Truthfully I don't know. But I can't run to the hospital, to get a new test redone, every time I feel a new painful sensation, so hopefully this thread here will help alleviate some of our worries about such things.

Anyone else here want to share their "alternating pains" stories. I think it would be very helpful to us all, specifically in putting aside paranoia and unwarranted fears.

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[Dr. Smith]

Originally Posted by Jesse M

I personally feel that it's just the "flavor-of-Pain" of the week type of thing - as I often have new and frightening pain sensations for a week or so, before they fade out and turn into something else.

You old enough to remember Roseanne Roseannadanna? "It's always something."

If it's putting pain into words that's vexing you, you can find some pretty good lists of adjectives and advice here: describing pain

I was like that in the beginning (new pain every day/week) but it finally settled down. Have you gotten the feeling your socks are folded over, or that you have socks/tissues bunched up under your toes? That was one of the first sensations I got -- turned out to be quite common.

pins & needles
electric shocks
needle jabs
rude cramps
aches to the bone
burning feet

Sometimes the numbness is actually a relief...

Doc

[echoes long ago]

walking on broken bones
pliers squeezing toes
throbbing
fizzing
burning
sprained feeling
electrical shocks
jolts

[Kitt]

In the last years of her life Gilda Radnor released a memore of her battle with ovarian cancer. After she was told it was in remission she wrote the book "It's Always Something" which was a catch phrase of Rosanne Rosannadanna character. This included many details of her struggle with the illness.

[Jesse M]

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I remember her - Gilda Radner of SNL -I believe she was married to Gene Wilder of Blazing Saddles and Stir Crazy fame.

Well, I guess my point here, is that when we experience new types of pain, or in my case, pain occurring in other areas where I hadn't had it much before - I get frightened.

I primarily thought that PN mainly just affected your hands and feet, not pinching your scalp or caused burning episodes on your back. ...Well - does it? I'd like to know that I'm not the only one feeling this stuff.

I'm also very alone about this condition. The only time I can talk about this appropriately is here -I don't want to be a downer for my girlfriend or family so I do my very best not to mention my pains, even when I'm in a bad flare up. It has already put a big strain on our relationship. It's hard to be the fun-loving guy I used to be, but as time passes, I'm getting better.

I've heard of marriages breaking up over such things.

I think fear itself, has a lot to do with depression and emotion regarding PN. If I knew I was going to be alright after feeling some newer type of nagging pain (as it always does between flare ups) I would not be so stressed over it.

As it was, most of the hot stinging in my back and skin faded out today, and I felt, that had I not stressed out over it so much in the morning, I would have had a much better day.

I've had PN for over a year now, and I'm much better now than a year ago, so, I should have known better. In many ways, I'm healthier now than before, since I don't get ill very often and the only thing that really bugs me now-a-days is the PN pain.

I really have to learn how to control my anxiety over these things. I wonder if any of you feel the same? As well as how you guys cope with it.

I'd really like to know if you guys feel pains in other parts of your body, too. It would make me feel less like a hypochondriac and calmer to know these are normal for PN victims.

Also on another note - I have been seeing new commercials coming out about Neuropathy and treatment clinics and such. It's as if more and more people are getting PN; I've never seen commercials about it before, so why now?

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[Dr. Smith]

Originally Posted by Jesse M

I primarily thought that PN mainly just affected your hands and feet, not pinching your scalp or caused burning episodes on your back. ...Well -does it? I'd like to know that I'm not the only one feeling this stuff.

The Peripheral Nervous System refers to anything/everything beyond the brain & spinal chord, so in theory, anything goes. PN usually affects the hands & feet but there are quite a few people here for whom it affects much more, so no, you're not the only one.

I'm also very alone about this condition. The only time I can talk about this appropriately is here -I don't want to be a downer for my girlfriend or family so I do my very best not mention my pains, even when I'm in a bad flare up.

I've heard of marriages breaking up over such things.

That's actually not a bad policy, and I think you're lucky to have figured it out early. We've had threads on this very topic on several forums here in the past. The concensus seems to be that, aside from support groups (e.g. here), painees have a few intimates who understand and in whom they can confide. These are our true friends.

Alienation is one of the stigmas of chronic illness.

As far as relationships breaking up, sadly it happens. I don't know any specific figures, or if/how time (# of years in relationship) plays into it.

I think fear itself, has a lot to do with depression and emotion regarding PN. If I knew I was going to be alright after feeling some newer type of nagging pain (as it always does between flare ups) I would not be so stressed over it.
....
I really have to learn how to control my anxiety over these things. I wonder if any of you feel the same? As well as how you guys cope with it.

And you would be correct. The same applies to most any chronic condition/disease/illness. It is a life changing event, and it is also a process (journey); there are stages we all go through akin to the Kübler-Ross stages of grief.

So yes, we all feel it to some degree or other. The best way I know to cope with that aspect is knowledge; become informed and aware of what's happening to us. Knowledge is power.

Anxiety is worry. I don't believe in worry; it serves no purpose. Easier said than done, but again, knowledge can help. Learning about anxiety/worry is the key to understanding and control over it.

“If a problem is fixable, if a situation is such that you can do something about it, then there is no need to worry. If it's not fixable, then there is no help in worrying. There is no benefit in worrying whatsoever.”

― Dalai Lama XIV

Are the commercials/ads you're seeing online? If so, it's because you're looking up & reading about PN, etc. Google, Yahoo, et al track everything we do online, and target us for advertising relating to what we're looking at. https://en.wikipedia.org/wiki/Online...sing#Targeting

Most of those "treatments" are bunkum, but they eventually get brought up here, so you can search the NT archives for them. You can cut down on some of that by upping your browser security settings, and there are some free add-on apps that help cut down on more.

Doc

[daniella]

I am sorry you are struggling and can relate to both the mental and physical aspects. I have changing feelings too and if I went to the doctor for every new symptom I would be there weekly. I worry that one day I will think it is my rsd or pn condition and it be something else. As my condition has gone on things have changed in how I feel. For example I have developed severe burning in the last year or so where I feel on fire and before I had times but not so consistent.
I also live in fear of more things happening physically. I also worry about environment issues, people bumping in to me, I could go on. I have been to therapy and done things such as biofeedback to help and I was going to suggest similar for you. Also therapy for you and your significant other because chronic conditions impact both sides and communication I feel is important.

[mrsD]

Alot of people have PN. It was at one time considered an "old person's problem".

But it can be in fact a warning sign of environmental toxicity.

Do you have any concept of how many millions of people use statins? Acid blocking drugs....? every day? How many people get vaccines now because they think just because they are available in the pharmacy they are SAFE? Not counting the diabetes patients, these alone account for PN occurring in younger and younger people.

I don't know the stats on CMT... but it is listed as
1 in 2481 people who have this genetic type of PN. Some remain undiagnosed, and some are latent, with symptoms triggered by things in the environment.

[glenntaj]

--the most common presentation of peripheral neuropathy is distal, in which the extremities farthest from the center of circulation are affected first and worst--often because many types of neuropathy, such as diabetic, involve circulation compromise to the nerves as a major part of the syndrome--there are plenty of neuropathies which affect many parts of the body (as Dr. Smith says, there can be symptoms anywhere there are nerves).

Often, the types with prominent proximal (head/face/body) symptoms are those with acute or sub-acute onset, and are nutritionally, toxic, or immune-mediated (these conditions tend to have more systemic presentations).

And yes, the language to describe the positive, "extra sensation" symptoms of neuropathy (as opposed to the negative, "reduced sensation" ones like numbness) is not always as precise as we'd like, as it involves sensations being produced without apparent extant stimuli. Burning, electrical jolting, feelings of some thing touching when nothing is there, hot and cold sensations, prickling, tingling, crawling, etc.--all have been used, and none of them seems completely adequate, notwithstanding that no two people have exactly the same symptoms and many have symptoms vary over time.

When I had the worst phases of my acute-onset body-wide small-fiber neuropathy (for which no cause was ever found, though autoimmune molecular mimicry process are suspected) I used to see imagine you got sun poisoning all over the body and then it was rubbed with steel wool. (There's an image.)

[mrsD]

Everyone has "something" healthwise.

People with personalities that express the need for control, have the hardest times coping with any illness, or chronic condition.
It might be a good idea to get some counseling to help cope with pain. You can train yourself, to keep your perceptions of discomfort in the background, as much as possible.

Autohypnosis and relaxation exercises can help to shift focus from the "self" to the world at large. You can learn these techniques in therapy.

The more you focus on yourself, the more disturbing the symptoms of PN can become. You can actually create pain pathways in the brain... like learning a skill does (bike riding, playing an instrument, sports skills).

What I do is set aside a small bit of time each day (15-20min), to evaluating where I am that day. For me that might mean that going on LONG errands to Costco or WalMart may not be possible that day. I might have to postpone some garden tasks. When that time is over, I move on with my activities. Doing it this way, allows for judging if you are worse or need medical help. Harnessing your strengths to work FOR you instead of against you, is what you have to work at.