OK, so I am in one other forum that is for people with AI disease, and many also claim to have Fibro with their autoimmune disease.....I have suggested to get skin biopsies. Those that did, came back with diagnoses of SNF.

Some one else posted that their 'neurological' problems were 'fibro'.

So, is the push to NOT test people for SNF, and instead just give them Lyrica and call it Fibro? WTH?

So what is next....tell every one with small fiber that it is just fibro and not do any further diagnostics or any treatments? Just pay loads of bucks to pharma for Lyrica?

Then I would ask....why do so many people have this condition by any name?

Fibro may be triggered by several things. Studies show,
arthritis
vaccines
trauma (car accidents)
infections

The current thinking is that Fibro is inherited (8 times more frequent in relatives) and is triggered by a painful or inflammatory event, which then results in amplification of sensory pain data being perceived by the brain as severe pain.
Whatever mechanism (not discovered yet) that screens out most minor sensations, doesn't work and all sensations get lumped into high gear.

The Doctor I saw at a conference says it is like having a radio turned up full volume when not necessary.

That was according to Dr. Clauw
http://www.prohealth.com/library/sho...cfm?libid=8716

I have the syllabus from his talk 3 yrs ago.

Here is my issue with this. If AI diseases cause SNF, then we should know that....we should not just label it a name reserved up to this point, for a condition present when all other conditions have been ruled out.

Also, fibro does not have the same clinical ramifications that SNF has....including paraneoplastic PN.....

I would think Fibro would be a possibility in the absence of SNF....in the presence of SNF, it seems to me, moot, since SNF would cause the pain and the autonomic dysfunction.

I can think of no cheaper diagnostic test than pushing on tendon insertions...which btw hurt in 'normal' people. If they skipped all other diagnostics and just did the skin biopsy, my thought is, they would find a large number of people with SNF.

I would think PN would be a trigger for some people to develop Fibro (if it is in the genes for them to do so).

Not all PNers will have Fibro, and not all Fibros will have PN for their trigger.

Fibro would NOT be suspected, if only feet were involved, or hands, or whatever. Fibro typically presents with all over pain, and much of the time in muscles. I believe Fibro is a central pain disorder right now. And many doctors don't understand it, and I went to a medical conference and most of the 600 there were doctors.
We were told that trigger point diagnosis was being dropped and is pointless. Dr. Clauw was brilliant, and friendly. Google him and there are copies of some of his presentations to be found.

I have a thread on our Fibro board based on that lecture:
http://neurotalk.psychcentral.com/thread20030.html

Now THAT is a pretty good way to put it!
My radio has been on 'overdrive' for longer than i care to say.......AND my speakers have been BLOWN for years!!!

The volume dial is a good way to describe 'it' whatever it is.

If they are going with Fibro as a working diagnosis, they NEED to come up with what it IS, and not what it isn't, as a disease. It is the same with Sjogren's....what IS it? I have lumped myself into UCTD, with SNF and sicca (like half the people with Sjogrens).

I have the +ANA, but no serum markers for Sjs...in my book=neurological sicca. I think my sicca is PN....therefore, with a +ANA, but -ENA=UCTD, with SNF....and sicca.

And, yes, it does feel like the radio is on and up full blast....nothing doesn't hurt....and you know what....it didn't hurt any less when I was in kick-butt shape doing triathlons...it hurt the same. So it is not deconditioning. I buy degenerative arthritis too, and mine is so bad, I have given up buttons...zippers are next.....I am ready for VELCRO!

I would think that sensory nerves all over one's body, regardless of location would cause that feeling....maybe it's me, but, I think SNF can cause that all over pain....so can inflammation. In the absence of SNF or, in the absence of a +ANA, then, maybe fibro. I just hope they check people for SNF before they tell them they have fibro.....just in case something like IVIG is indicated.

Well, I need to batten down my hatches....we may get a trip to see the wizard tonight....more storms on tap.....I can tell.....I HURT all over. On the other hand, my dog has not yet wrapped himself around the downstairs toilet.....yet....

--I think the difference is in the location of the problem.

Small fiber syndromes, through skin biopsy, will often show damage to the actual peripheral, unmyelinated fibers--excesive branching and swelling, frayed fibers, reduced intrepidermal nerve fiber density. I've yet to see that come up as a finding in people complaining of fibromyalgia-type symptoms--though it's certainly possible, if people are inspecific in describing symptoms, for doctors to confuse one with the other, or for people to have evidence of both.

I tend to go with Mrs. D's theory that Fibro is a more central condition, and the mechanism is more a disorder of signalling having to do with neurotransmitter dysregulation and neuronal sensitization. There has not yet been a demonstration in fibro that there is actual mechanical breakdown of nerve fiber itself as there usually is with small-fiber neuropathy. I also think this reflects the difference in symptoms--most people with small-fiber neuropathy will report that particular dysethetic burning pain, or other parastheses, and allodynia (pain without stimulus to cause it). The pain patterns in fibro tend to be more nociceptive in perception, e.g., more like "regular" pain dialed up too high.

I think they need to rule OUT SNF before they call it Fibro....and yes, I WOULD also be deemed as having Fibro, provided it was no longer a diagnosis of exclusion. Those diagnosis of exclusion are always a quagmire, and UCTD is a diagnosis of exclusion based on a negative ENA (altho technically, I, overwhelmingly do meet the criteria for Sjogren's, which would make me unable to have to have UCTD). I am not totally convinced it is SjS that has caused my SNF.

Anyway, rule out diagnoses are always difficult....kinda like an unfulfilled relationship.

........and that's where the 'horse' comes in at, Cy.....

This is a good thread and I'm glad to see this discussion.
I agree 100% 'they' should rule out SNF before slapping the 'Fibro' diagnosis in our med records.
Question is WHY won't they DO that!! Despite describing the horrible constant 'burning' pain located solely in bilateral knee area, my 1st 'Dr' did the 18-point 'pressure pokes' all over my body and before I could even finish saying 'yes' or 'no', he said 'Yep, Fibro', and rushed off to his next pt.

So, in my case, my initial presenting complaint fits to a 'T' what Glenn describes in the last two sentences of his post above......
I do not like to 'bash' Dr's......but, do alot of them simply not HEAR us? or CARE? or KNOW? I'm pretty sure I was speaking plain english when I was describing my pain. Is the extra 'paperwork' it would require THAT difficult to squeeze into our case management?
I'm not exaggerating when i say it could have potentially saved the healthcare industry over $100,000 if he would have just sat there 5 extra minutes

Ditto, Rrae.