Types of PN Neuropathy pains
 

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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.:eek:

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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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... :rolleyes:

Doc

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

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.

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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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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.

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.

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.

Quote:

“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

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.

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.

While--
 

--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.)

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.

CMT affects the Peripheral Nervous System (PNS) everything outside of the brain and spinal cord. CMT is the most common type of inherited neuropathy. It is listed on the MDA site with about 40 other diseases. (It's under the umbrella of the MDA as we say). However, it is not the same as MD where you are born with diseased muscles and MD is of the Central Nervous System (CNS). Much research is being done concerning CMT. A person who has CMT is born with healthy muscles. If they inherit the gene then it's when symptoms might become evident. You can be young, old, or in-between when symptoms might appear. Or symptoms might never be that evident and be attributed to something else such as RA. CMT symptoms vary greatly even within the same family. You can have high arches, flat feet, or normal feet. Some peoples hands and arms are affected as well as their feet and calves. And it certainly can affect other parts of the body as it progresses. And CMT does progress.

On the other hand, MS is an autoimmune disease (body attacking itself) and it is of the CNS.

CMT is has been misdiagnosed as Frederick's Ataxia, MS, Polio, you name it. Sadly that still happens today. CMT is inherited. It does not come from the environment or triggered by it. There are rare mutations. As of 2008 there were 50 types of CMT identified so far and there is no end in sight. There are people out there who have PN and it very well could be a type of CMT but they are not diagnosed. It might be a type which they do not have DNA blood testing for as of yet.

CMT is a very complex syndrome. There is no cure/treatment for CMT. No magic bullet, no supplement, no nothing. Maybe one day they will find a cure/treatment for a type of it. CMT1A is the most common. An expert neurologist who knows CMT and family history are a plus.

Kitt
(CMT)

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On several points:

Before I got PN, I already had anxiety issues from certain things in my life. Locally, I'm a popular artist and writer of horror and science fiction and when I felt too anxious, I could get some relief by doing my art-thing.

I noticed that my best days are when I am not letting the worry get to me and just go about my life. I genuinely agree so much that worrying does not help in any way. I seen a saying recently that I decided to remember:

"Worrying about tomorrow only ruins today's peace!"

Man, there is so much truth in that adage. But it's hard for me. Being as how I had an anxiety condition before my PN, this only made my situation worse. But I do quite well, most of the time.

For me, I feel that I did get the right diagnosis. 3 different doctors from different hospitals believe I got my PN from Cipro. This probably because they seen this before and they were E.R doctors, untied to certain formalities. (1 was a young neurologist).

He was so accurate about it, that it seems he predicted my symptoms over the next year in their very order. (He is the one that believes I'll be "close-to-Normal" within another year.) I hope that is true, I did get so much better within the last year. Thank God.

They say I got PN from being prescribed Cipro along with Alieve (Naproxen), while I was taking Clonazepam (an anxiety Benzo). Apparently, this is well known in the medical community as a lethal mix for the CNS system. So much so, it can even be seen now on Wikipedia along with many, many other webs sites.

This brings me back to what I meant when I said; "I see more ads and commercials about PN."

I seen them on television, not the net. They even have a phone number to call listed below it. I don't know if you've seen this yet, but it's the only one that I've seen thus far that is not about fibromyalgia, diabetic PN drugs, or lyrica. It's the first one I seen that addresses Neuropathy.

I can only imagine that this is unfortunately compounded by more and more people getting "Floxed" by harmful drugs.

However, perhaps there is a positive side to such sad circumstances. That would be that scientists/researchers will have to pay more attention and time in providing treatments and additional research in curing or creating products to relieve PN and its pain.

As for the impact and change it makes in our lives: My wife/girlfriend expects me to act the same as I did before I got PN, and that is the main problem with us. She does not understand the condition, and worse, simply does not want to. (I've tried to explain it several times.) So, I just have to keep pretending to be the same, which is not fooling anyone.

Still, she is right about not wanting to get sucked in by it. I love her and my family, so I don't want them to be affected by this madness - it already destroyed my life so much, I do not want it affecting them.

The other day, 2 gang-bangers threatened to rob me near Food-For-Less. I put down my groceries and got into a fighting stance. They looked at me strange and just walked away laughing. Funny for them, I'm sure - but I'm certain had I let out my full fury over a year's worth of PN pain on them it wouldn't have been so funny!

Before, I would have been upset or frightened by this - but I was not. What could they do to me compared to PN? A part of me truly wants to be killed. I'm not saying I'm always depressed, I'm quite alright most of the time. But I think there might be a part in all of us that's just a tad bit suicidal. So ordinary threats like that seem to loose its power on people like us.:mad:

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Hi Jesse
 

I am sorry you have PN. The words you describe it with are very accurate. I beleive it is environmental as MrsD does. Try to get on some good vitamines, especially B12. This has helped my own PN. We are all here to support you. There are alot of members who have this, and can relate. I wish you all the best, and less pain. ginnie

Perhaps for other types of PN but not for CMT.

The literature currently has articles like this, demonstrating drugs or other things triggering CMT symptoms in otherwise asymptomatic patients:

http://www.ncbi.nlm.nih.gov/pubmed/8600343

http://www.ncbi.nlm.nih.gov/pubmed/11442172

http://www.help4cmt.com/articles/?id...scular-disease

Levaquin unmasking asymptomatic CMT:
http://www.theannals.com/content/45/10/1312

While environmental events do not CAUSE the genetic mutation itself, it seems that they can trigger symptoms, in people who don't know they have CMT until the event occurs. Some people live without knowing they have CMT because onset varies so much between patients.

The first site talks about Vincristine. It is one that a person with CMT should never ever have. It also does a number on some of the general population. A young man (non CMTer) in our town had it and it was awful and stopped. It is on the medications alert.

The third site talks about Allison Moore. I know of her. Her father had CMT and she inherited it from him. It was a combination of three drugs one being Vincristine that she took for cancer in her leg. This set it off for her. Had she known that you should not have Vincristine she might not be wearing AFO's today and CMT would not have progressed so rapidly in her case. She has said this herself in a video on CMT. There were signs of her body which should have been caught much sooner along with the family history. She had high arches (not everyone with CMT does) and she couldn't stand on her heels. This was much earlier in her life. The Vincristine did a number on her for sure.

We were told at one of our support group meetings by an expert neurologist who knows CMT that if we were given Vincristine we could end up just laying there and not be able to do anything much at all.

The fourth site is one I have read before. It talks about the "possibility". And this person had plenty of symptoms beforehand.

Not the environment, so to speak, it's the medications these people had that brought CMT to light even though there were other signs which apparently were not recognized at the time.

I totally understand. Kitt... drugs are part of our environment.

I guess we just disagree on that?

Take a person with latent CMT... 100 yrs ago. They get cancer, and there is no vincristine... so they die of the cancer. Today they would be given this...and if they didn't know they had CMT, then they would react to it.

Chemo in general causes PN in non CMTers too. It damages DNA.
Only this action is more devastating to the CMTers than non. But both types suffer to some extent.

Environment to me is where you live. That's what I find. Yes, we do disagree. A person with CMT would more than react to Vincristine. They could die. It is deadly to us. That's why it is on the list and with the highest priority. It is definitely high risk. CMT was given a name in 1886. It was just known as Charcot-Marie-Tooth disease or Peroneal Muscle Atrophy and there were no types yet given. Not until about 1991 and then it was just CMT 1 and CMT 2. No subtypes of it either then.

Yes, chemo in general does cause PN in non CMTers. I do know enough people with that problem. In fact they are going thru it right now and others I know have died not that long ago.

We will just have to agree to disagree I guess. :Sigh:

There is much more in common with your positions, Mrs. D. and Kitt, than that contradict! Vincristine is poison for us, and Cipro, Levaquin, and Statins can cause sudden escalations, I have experienced several! It is really important that everyone be well educated about this subject of PN and medications in general. As Kitt said for CMTers it can be life threatening.

Both of you are really driving home the point that there is no substitute for knowledge, especially since our doctors are so seldom knowledgeble about drugs or able to help.

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I don't know what CMT is, but I've heard of it in passing. From what I gather, you guys are saying that some type of inherited disease (CMT) can be induced or brought out by certain medications - is this correct???

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On another note - I been braving high humidity mixed with thunderstorms over the last week or so. I spend a lot of time with my granddaughter, riding bicycles and playing in my yard outside, despite the last 2 weeks of heavy humidity, insane mugginess and sporadic thunderstorms. I have NOT been having those week-long flare-ups anymore, but just random micro-flare-ups during the day that fade out after about an hour or so. I'm so very glad about that -thank God.

I figure I'm doing quite well, considering the bad weather and all. I should stay in during this type of weather, but here, in Chicago, our summers are so short - so, I refuse to let the bad weather ruin our summer time.

I'm not sure if any of you can relate with this stubborn notion. LOL

Yes, Charcot Marie Tooth is inherited. At this time it remains permanent. Different people experience different onsets, and different progression rates, of this type of PN.

Do you read this forum at all Jesse? We discuss this a lot. Especially lately, it seems.

http://neurotalk.psychcentral.com/thread121564.html

Kitt and Susanne post about it often. CMT is the abbreviation for it. They know much more about it than I do.

We are lucky to have both of them to help new posters, as CMT patients do not often come here. They accept their lot, and since supplements are not going to do much for them, unless they have a severe deficiency that needs correcting for other reasons, they won't look here. Some CMT patients have had their symptoms since childhood, others may be later onset, and there is some evidence that drugs may precipitate latent CMT.
It is a complex topic as there are many variants to the genetic
testing results.