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Old 03-09-2007, 06:13 PM
glenntaj glenntaj is offline
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Join Date: Aug 2006
Location: Queens, NY
Posts: 2,857
15 yr Member
glenntaj glenntaj is offline
Magnate
 
Join Date: Aug 2006
Location: Queens, NY
Posts: 2,857
15 yr Member
Default Believe me, we understand.

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).

Last edited by glenntaj; 03-10-2007 at 06:55 AM.
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