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.

Isn't SNF primarily in the feet and hands? My abnormal sensations are all over the body. I also have innternal tremor in right calf and abdomen and chest upon wakening. Does anyone else experience this?

Can't comment on the "scientific" aspects here, but am loving this discussion anyway.

However, just want to add that:

The first two diagnoses that came back at the start of the ruling out process for me was SFN from skin punch biopsy and Hashimoto's. PCP and cardio suggested Sjogren's and seeing a rheumatologist. I did, at the Cleveland Clinic for the first (and last) time. She pressed down on the trapezius, pressed the hips, etc.. and asked if it hurt. I said absolutely not. She announced I had fibro with a "little bit of sicca," "some SFN" and "anxiety."
I remember just looking at her and saying to my husband, "let's go."

When I brought her notion back to the PCP and subsequently the new rheumatologists at University Hospitals, as I sit here and write - they all laughed and said absolutely not. Final dx: Sjogren's.

Ever since the term "fibromyalgia" became a buzzword in the 90's, I wondered if there really was such a thing as nobody I ever knew ever had those kinds of complaints. Osteoarthritis, rheumatoid arthritis, musculoskeletal issues - but otherwise nothing resembling fibromyalgia unless it was called rheumatism in the "old" days.

Future Rheumatology
April 2008, Vol. 3, No. 2, Pages 127-131 , DOI 10.2217/17460816.3.2.127
(doi:10.2217/17460816.3.2.127)



Priority Paper Evaluation
Preliminary evidence for small-fiber neuropathy in fibromyalgia patients
Roland Staud*
University of Florida, McKnight Brain Institute, Department of Medicine, Gainesville, FL 32610–0221, USA. staudr@ufl.edu




Kim SH, Kim DH, Oh DH, Clauw DJ: Characteristic electron microscopic findings in the skin of patients with fibromyalgia – preliminary study. Clin. Rheumatol. 27(3), 407–411 (2008). Peripheral tissue abnormalities may contribute to the increased pain sensitivity of fibromyalgia (FM) patients. To address this issue, the authors obtained skin biopsies from the deltoid region of 13 FM patients and five healthy, pain-free control subjects. After fixation, all tissues were examined using electron-microscopy (EM) by an investigator who was blinded to the participants’ diagnosis. In contrast to healthy controls, the skin biopsies from nine out of 13 FM patients showed axons that were localized to the periphery of unmyelinated Schwann cell sheaths. These findings were associated with ballooning of Schwann cells, diminished folding of Schwann cell sheaths and smaller axonal size. Myelinated nerve fibers were unremarkable. The EM findings of this study show that the cutaneous nerve endings of FM patients possess unusual architecture, as well as ballooning of their associated Schwann cells. Similar changes were not detectable in skin biopsies of healthy pain-free controls.

That is very interesting! I wonder how that compares to SFN type explanations? I wonder if they could compare to PNers?

I don't know anything about the biopsy details. I hope Glenn sees this soon!