I really believe that for some of us, something happens to make the brain just freak out and start interpreting pain signals in a wacko manner. I think a contributing factor for me was going through a year and a half of terrible migraines with almost no medicinal relief until we finally hit on a drug that worked to prevent theml Just way too much pain. I think pain begets pain. It is a weird story, though, and I've learned not to tell doctors because they act like I am crazy.

oooh, i like this thread. It reaffirms my hope that someday I'll meet someone having a similar story to mine (you know, to better share notes with)!

So, the current diagnosis is ideopathic small fiber sensory neuropathy with the primary being PAIN!

It started when I was about twelve and was assessed as 'growing pains'. It was only in my legs and from the mid-calf down--but not to the toes, just to mid foot. It only happened in the evening (around bed time) and only a few times a month. I used to ask my stepfather to 'rub the pain out' as massage relieved symptoms while it was happening. I'd somehow manage to fall asleep with the pain and it would be gone in the morning. I also occasionally got burning feet/cold feet. All of these symptoms were/are always bilateral.

The pain is an inside pain that defies description but radiates outward seemingly feeling like from it comes from the bone. It's not acute like I paper cut but constant [like bad menstrual cramps in my legs, I guess] and every bit as discomforting and disruptive to concentration/life.

About 4 years ago the frequency increased and became at first every evening, and then it turned into every day, all day.

I currently have no abnormal finding in the EMG/NCV but my sensations are less in the foot area when it comes to the tuning fork thingy and the safety pin.

... since we are swapping war stories..here goes mine, and like Dakota says ,I hope none of you will think I am disturbed. It is 10:30 pm I was lying in bed for a good nights sleep , when a strange warm flushing sensation started in my toes and progressed upward through my body to the top of my head. This happened within 30 seconds beginning to end. It left me practically breathless and disappeared in about 15 minutes. When it was gone I was left with 2 burning bands about my ankles for the rest of the night. The next morning I felt like the life had been literally sucked out of me. Wala! SFSN ,SO THE NEURO SAYS. This was April 2007. Boys and girls the whole incident seemed as if an alien was taking over my body. That's my story and I'm sticking to it...Tom

HI Dakota!
I have wondered if they years of Interstatial Cystitis pain and Barrett's Esophagus pain had anything to do with the Neuropathy pain I'm dealing with now?? I always trugged along with all the pain and kept going on in life with raising my son and working etc........but there's always been pain in my life. That pain always interupted my sleep and I'm sure some how it's defined who I am today......because pain makes you strong. My husband always tells me that he could never have gone thru all the pain I have......but I tell him sure he could have....we all do what we have to do.

HI Hurty! Welcome!!
WoW sounds like you have had years of this crappy Neuropathy pain! Sorry to hear that! I've just had the worst of mine from this past Feb., but Lord knows I've got other pain in my life and have for the past 30+ yrs.
I hope you are on some pain meds that are helping with your pain. I don't know what I'd do with out good pain meds! Take care!

Hahahahahaha! Tom, that is a great story. I am so sorry you have PN, but you might get the prize for the strangest onset. And Hurty, 12 years old? Isn't it remarkable how none of the textbooks or articles mention this type of thing. Here we are with all of these interesting phenomena, and no one has any idea.

you are absolutly right. Here we have a nice collection of stories on PN and different stories on onset, but it seems that our doctors or neurologists didn't here about them. I think we can write a book ... something like "our story..." or so.
I would like more people telling there stories. It is so strange, all this.
And - if you are thinking of Tom's story, mine was almost the same, but it took several days/weeks and not in such a short time, till it reached where it reached. What makes me think that it can be a virus...
(I hope all of you understand my broken English....)

It was cool in the morning so I dressed warmly. I was running around doing errands as I was prepering for a houseguest. I remember I was excessivley hot. Hotter than I had ever been before,and I was sweating more than I ever had. I felt the most terrible painful stabbing in both eyes, I thought I would be blind by nightful. I had that terrible stabbing/electric pain for 3 days in my eyes. Then it went away,but the back of my head felt the same pain. It was the worse burning pain ever. Clearly not normal. By that time I knew something horrible had happened to me.

I felt it moving down my arms,torso,back,and finally into my legs. I checked myself into hospital,and after a few days in there and all my blood tests coming back normal,and my neuro exam was normal,they sent a psychiatrist in to speak to me. I denied being suicidal and being on drugs, so I passed the exam.

The head neuro of this hospital told my husband in his 50 years experience he has never heard of such a story,and can find nothing physically wrong with me.

My husband denies I have neuropathy up to this day.

Now I'm sure there are a lot of neuros but it seems that many say they have never heard of,don't know why,can't help,send to another doc. That frustrates me. I never feel from the neuro's I see a definate answer,path,guidelines. More that they just don't know and I hear that from others too. It seems a lot if you don't have brain or spine issues its not there specialty. Maybe I'm wrong but I wish there was more research but I guess since there are so many cause of neuropathy its hard. Its not clear cut well other then the pain.

In March 2003 I had bi-lateral knee replacements. I was of course on many pain medications while in the hospital. I spent two weeks there. Three days in intensive care and then they removed the epidural that was controlling the pain. I noticed my feet were icy cold. I told one of the nurses that I couldn't get them warm. I had them wrapped in a sheet and blanket. The rest of me felt normal. The icy feet thing continued for awhile, even until I returned home. Once home and moving again, doing normal things, the cold feet stayed. I decided it was time to detox from all the meds that I had been on for pain before the surgery and also after the surgery. A lot of medication! I started it by myself, cold turkey. After a week of agony and misery, I decided I needed some help getting the rest of the way. So I checked myself into the local drug rehab clinic and let them help me detox the rest of the way. It took about three days. They said I'd done the hard stuff myself. During all of this my feet stayed icy.

About a week later, my feet changed one day from icy to burning and sweating. They sweated so badly that my shoes squished when I walked. And burn...oh lordy how they burned! At that point I told my PCP about it. He said well lets run some tests. After the tests he told me I had idiopathic PN. About a week of this and I said to my husband, "the only thing that is idiopathic is that idiot doctor." I contacted a neuro. I went thru 4 neuro's. I developed dry eyes during this period. Finally a small town country doctor in a town 60 miles away put it all together. Dry eyes, dry mouth, neuropathy ...voila!!!...Sjogren's Syndrome. Then he retired and I was stuck with the locals who didn't understand that Sjogren's affects the nervous system sometimes. They said it was only dry mouth and dry eyes. A nuisance disease! I pushed it all the way and went to Mayo Clinic in Rochester Minn this past Dec.

They diagnosed is as small fiber sensory neuropathy caused by Sjogren's Syndrome. They understood. Now my neurologist here follows guidelines set up by Mayo for me. That's my story and I'm sticking to it.

Billye