And the expereince of getting depressed due to chronic grinding pain is not unique--many of us here, including myself, can report that.

It's why many of us have said the first priority in dealing with neuropathic pain conditions is pain control, which make take time and a trial and error approach to many different combinations of medications and supplements. Once pain is decently controlled--it is rare to be pain free, but one can have it controlled enough to be functional--they one can start researching possible causes and treatments in earnest.

When my acute-onset body-wide burning pain began, it happened so suddenly that I thought I must have injured something, but as the pain spread it became apparent that this was something systemic. Even before I began to get extensive testing, I was put on Neurontin and was fortunate that it began to work almost immediately to knock down the pain, though it was weeks before I was moderately functional. Much of that time I could not tolerate clothing, bedsheets, breezes, was not sleeping, was not eating, certainly not working, lost weight, and yes, got depressed--especially when all my initial tests were "normal" and it seemd like I might be crazy. The fact that the Neurontin was working, though, was a hint something was going on. And the drug worked well enough for me to start dong reserach to try and find out what was going on. Eventually, I was able to get to a tertiary center (the Cornell-Weill Center for Peripheral Neuropathy) and get a skin biopsy which documented damage to the small nerve fibers that subsume the sensations of pain and temperature, a kind of damage most standard neurological tests will not reveal. (Small-fiber damage cannot be seen on nerve conduction studies, which only measure larger nerves, and is very difficult to diagnose, leading unsavvy doctors to think the problem is psychological rather than physical.)

I suspect you may have some sort of small-fiber damage. There are many causes of this, though many remain stubbornly "idiopathic" after much testing. In many of these, autoimmune or toxic components are suspected, but you are at least owed a thorough investigation before they label you "cause unknown". That's what Liza Jane's spreadsheets are for--to make sure you can monitor testing results over time and to suggest testing avenues doctors may not ordinarily think of.

Take a look at these two articles from the Useful Sites:

http://www.thecni.org/reviews/13-2-p07-treihaft.htm

http://www.dcmsonline.org/jax-medici...uropathies.htm


The first talks about small-fiber syndromes, and the second analyzes some different categories of neruopathies (some of which sound like your presentation).

Hi Lupin, The onset of my PN knocked me rotten too, i had never heard of anyone, friends, families anybody who had anything remotely like these weird symptoms that were happening to me, any wonder we get anxious , who wouldn't ?
I was madly searching the net for answers, going from one GP to another, all with different diagnoses, its enough to nearly drive anyone crazy, then i struck gold finding the PN forum, from that day forth things started to make sense and i was guided by the experts here who steered me in the right direction.

tips ; you need to see a Neurologist that specializes in PN, all neuro's know what PN is ok, but having an neuro that specializes in PN will give you all the tests necessary to try to find the cause, not just the basic tests.

B12 levels, what may be said to be in normal range by some doc's whom some are decades behind in B12 research, this wonderfull lady knows more about b12 than most doctors do, i urge you to read her site, thats of course if you haven't already
http://roseannster.googlepages.com/home
I think once you get your pain down to a reasonable level then that should help your emotional state as well, i hope so anyway.
good luck
Brian

And--true to those of us who have celiac disease, gluten intolerance, and gluten sensitivity, have you thought about this approach? Many gluten intolerant people only have neurological symptoms and when they come on, they come on strong. Also, many who are gluten intolerant will find great relief of the neuropathy symptoms after being gluten free. It's worth checking out. Gluten (wheat, rye, and barley) can cause so many problems for so many people. Check out the gluten sensitive forum in this site.

Deb

My partner was with me and did try to speak up but to little avail. In the UK it if difficult to get to see a specialist of your choice unless your GP is prepared to make a referral to one , otherwise you just get whoever is the doctor/consultant at your local hospital, that is the way the National Health Service (NHS) works here. I have found the name of a specialist in PN and he is not far away from where I live. I will ask my GP to refer me as a private patient if I don't get something positive from the neuro I am seeing in the NHS, but an worried about doing this in case he brands me neurotic.

I have thought about the intolerance issue and I am looking in to where i can et some tests for this done. Truth is I eat very little which has a lot of gluten, I am a vegiaterain and generally eat well, organic stuff and a good home cooked varied diet. I aslo take suppliments B comlex, omiga oil etc.

What a position to be in!