well, PN is not what I wish to myself in early days. I didn't even know what it is - as many doctors don't know yet. And this is one of my big problem (and I'm sure I'm not alone). I have all these regular symptoms of PN and from time to time I share them with my primary doctor. She looks at me and said that I'm hysteric and panic. She said that I'm sort of imagining the symptoms since I did the skin biopsy (which was positive for SFN) and because I know the results - I have these sensations. She said that so many people have various symptoms but not everyone goes to do skin biopsy.
Also - my husband - he doesn't react as someone who believe me. all he says is that I have to do all sort of sport as walking, running ect. and I'll feel better.
But I have all these pains that caused me to be tired.
I feel so lonely.
Only lately my psycologist changed her attitude towards me.
I know that I have to be happy and live the day...

Need hug from you

Here is your hug:

But I have to say, anyone with a chronic pain issue, has to learn to focus elsewhere in order to have any quality of life.

The more you pay attention to the pain, the more it will become a fixed response and constantly torture you. Only you can change your perception of your situation. I strongly advise self hypnosis as an option to learn to dissociate from your troubling bodily sensations.

I focus on my family, pets, and hobbies, to minimize the pain I have. It does not "go away" but becomes bearable. Everyone has some bodily challenge. It might be epilepsy, a closed head injury, arthritis, MS, MG, cancer or whatever. Just read our other boards and see how many people are struggling every day with something.

I have to be blunt here. You don't have to convince others of your discomfort. I don't discuss my pain anyone anymore. No one wants to hear it. They have their own troubles. And in the same vein, they are not responsible for your pain either. Take it one day at a time, and do things you enjoy doing. I personally enjoy growing things, seeing them start from tiny seeds and becoming beautiful flowers. So that is one way, I keep my focus away from my slowing deteriorating body. I can't bowl anymore, I can't play tennis or racketball anymore, I can't stand on ladders anymore, but there are other things I can still do and enjoy. My house is more scattered and cluttered because I don't have the energy to keep it perfectly anymore, but hubby doesn't mind. So that stressor is less for me too.

You have to prioritize you life, and only you can do that.
Ask your psychologist to give you EMDR, that can help with anxiety. Also have her teach you self hypnosis. Those skills can help you cope.

Here is your hug from me...( )


now, as MRSD said, but without her wonderful sense of civility and tact .....here is what else you need....

A kick in the behind.....

You can not focus on this disease....you MUST, absolutely MUST distract yourself.

We all go thru periods of wallowing....I have. I still do. But nothing is as helpful as distraction....I too focus on my children, grandchildren, my small farm, my pets...and I am mindful that I can only inflict so much misery on my husband before he tells me to 'take a hike' and not in the literal sense.

Suffering is draining to others. It multiplies itself. It rubs off on others, even psychotherapists.

Here is another hug ( )....and a cold compress for where I kicked your butt....You can get thru this!

First, for the need to open the dictionary for the new words.

And second - this is exactly what I need. - guideline for how to behave with the new situation.
I'm trying not to focus on my pains (I don't like to use the word - illness).
But from time to time - I need those people who understand me. And you are those people.
I can get any "kick off" from you - because - you know what I'm talking about. you are there - more or less.And - what I'm telling myself is that if you can - I can also.

continue to challange me with new words in English. this can be the benefit of my PN...

[QUOTE=amit;656678]well, PN is not what I wish to myself in early days.

*** Yeah, neither did I. Last summer I took a wonderful class on pain management skills. By the time we were finished, there were over 200 different activities I could do if I wanted to try and lower my pain. There are 4 or 5 I can use and they will lower it at least half a point. But I have to do them.

*** Another way I look at it is -- my disabling pain doesn't really begin until 3 or 4 in the pm. "Disabling" in the sense I cannot do my usual work. But there are many other things I can still do, so I am grateful for the fact I can do my work until 3. There are lots who have PN who cannot.

*** Attitude is important. There is a practice called "mindfulness". I don't necessarily practice it in the manner you might read about it, but it means staying present in the moment. And while the moment might involve pain, if I pay too much attention to the pain I will miss all the other things going on in my life.

http://en.wikipedia.org/wiki/Mindfulness_%28Buddhism%29

*** But also I sometimes have days when I just feel sorry for myself. I don't dwell too long on it, but the combination of high pain and having to still deal with stressors, well, it gets to be too much and I just feel bad. But not for more than 10 minutes.

*** Plus I've found this is a safe place to let down. You-all understand me in ways my wife never will, so this is where I would come to whine if I need to.

Cowboy

When I come in here to whine, vent or otherwise express my displeasure at having this condition....

I expect a hug, too....and a kick in the butt, as well.

This is a wretched disease for all its prevalence, is totally shoved under the rug. I would think for all the misery it causes, it would be heavily researched.

Alas, we are left to our own devices....such as kicks in the behind.

*** What is your native language? Can you tell us a bit more about yourself?

Cowboy

Yeah,...........mee tooo !!
No one really understands, but when all those around me are
expecting me to be 'normal' and I feel that I just can't go on -
I have to say....... 'enough!! I'm hurting and just can't do it. I have to rest'
Then......

I pick myself up,
dust myself off,
& start all over again !!

(deedle dum de deedle dee dee.....
-Barum-Bump !!)

Hi Cyclelops,
I think I needed the kick you gave me the other day when you replied to me on the Sjogrens thread. You said I might never know what is causing my SFN. As a nurse that is difficult to except. I live my life working with cause and effect. But I am working on the acceptancepart.
I am waiting on the labs for the Sjogrens but in the meantime had a discussion with my husband last night. We decided not Jump on the band wagon unless the results from the testing are absolute.
Do you also have RA symptoms with your SFN? I am beginning to.
You are right no one understands what this is like. I was whining to my husband last night. Every now and then I lose it but I think I do pretty good.
Mrs. D is definitely right. We need to distract ourself from our pain. I work full time. No longer in hosptial but I am so happy to have my job. Yes I am exhausted by 3. I go home maybe do some laundry or something but I'm not really good after that. While I am in work. I don't think to much about the pain. Only a few select people in work know I have SFN. I do everything I can not to complain to them.
I have my kids and a 1 year old granddaughter. Talk about a distraction my husband says he never sees me happier than when she is around. Trying to keep up with a baby will distract you.

Thanks for the advise,
Thanks to everyone on this site. I don't write much but I read everyday. As I'm sure you all know it really helps to know you are not the only one and there is somewhere to turn.
Hopeful

Hope,

I have the full gamut of autoimmune stuff. In 3 years, I have torn both rotator cuffs, gotten bursitis in both hips, so many times the ortho wants to remove the bursae..(no way). Oh, and a few bones are eroding....not to mention joint deformity. I don't have RA tho.

I have diffuse esophageal spasm, AND nutcracker esophagus on occassion. I have arrhythmias and structural cardiac issues (but apparently not life threatening-and I assume we all have some stuff that is as they say around here, 'cattywompus'.)

Most of my teeth are crowns....I had punctal plugs until something happened and I developed a cavernous nasolacrimal duct that can be played like a bagpipe by pushing on my eyelid. That may be due to my car accident 20 years ago and the suspected lafort fracture that they never found....hmm. My bili is high, and I am watching my bmp these days for kidney stuff.

Oh, sing an ode to autoimmunity....

All that said....nothing causes as much misery as SFN. That and my two herniated discs....ugh.

Back in the olden days, they would say, 'My rheumatism is bothering me'....and that would be enough. I am content these days to say I have an autoimmune disease or connective tissue disease with neuropathy.

On children, I just got news that one of my kids is moving back in with us temporarily, with her 2year old.....oh boy. Come Fall I will be caring for my 1 year old grandson, when his mom deploys....oh boy. If grandkids make one happy, I ought to be in 7th heaven....or 6 feet under (just kidding-I plan on living in an urn after I depart this world anyway.)

I was a nurse before I became a farmer....I like being a farmer better. I don't have to think much when digging in dirt. I can wear my ipod. I don't have to worry about sterile technique. I work with animal manure, which for some reason is more pallatable than the human variety. And I don't have to call doctors. Note, my chickens just learned to fly, and somehow, this time when I counted them....there is an extra one....I still have no explanation for it. I have 6 rhode island reds, and I ordered 5. I have a grand total of 17 chicks. Now I need one more name! I busy myself with trivia which I can make seem important...like naming a chicken. It makes me forget I hurt all over and can't take another pain pill for 2 hours.

It is always a shock when we get neuropathy. I would be lying if I didn't say, 'why me?'. But the fact is, it IS me....can't change that. There seems to be no real clear causation even when one IS diagnosed with another disease. And there is no more disarray in any field than rheumatology. You can get a new diagnosis every week! I believed if I could find a cause, then we could treat that cause and voila, stop the neuropathy. Hmm, so far, that hasn't panned out the way I planned.

I can tell you that the more I have wailed the more people stay away, so, I have learned by experience, like many others, to reply, "I'm fine" when any one asks about my welfare.

I keep telling myself that is true...because in the long run, what is important, is that we believe we will be ok.....it is just a different kind of ok.