15 years ago, fibro was unknown
(or so rare docs had little to no info on it)
Its the new kid on the block in the last few years.
IMHO it is over dx'd and improperly classified in many cases.
Especially cases with sx in the MS,CTS,PN, etc. categories.

dany actually has a point--
 

--in that the technology to accurately read skin biopsies for neurological situations is not available everywhere, and is rather expensive. Only the most well-funded hospital/research systems with extensive neurological institutes tend to have them--Hopkins, Cornell-Columbia, Massachusetts General, Jack Miller, Washington University/St. Louis. And, the systems listed here are major research centers that, especially in the cases of Hopkins and Cornell-Columbia, actually did the pioneering research on using skin biopsy to determine intraepidermal small-fiber density and condition.

Then, too, the pathologists experienced in reading the samples are small in number as well, and tend, obviously, to be attached tot he same facilities.

The use of this technique is only around 20-25 years old, and has become more widespread in the last decade, with places like Hopkins running programs in which they will accept samples taken from almost anywhere and analyze them. But, I can understand how people outside urban centers may have a hard time getting this type of analysis done. The real tragedy is still too many neurologists THEMSELVES not KNOWING about this proecdure--with supposed continuing medical education, that's inexcusable.

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?

We can be grateful places like Hopkins will evaluate samples.:)
A agree, glenntaj, it's a "tragedy" when neurologists, themselves do not know the importance of the use of the skin punch biopsy.:eek:

In the Greater Boston area, fibro was being researched, was "known" (as well as it could be known at that time), and was not rare at all in the "mid-1980's. Harvard and area physicians (of all specialties were aware of the Fibro. research and any avail. info then). This was also likely true in other medical center/research facilities. I knew lots of people with fibro diagnoses, made by fibro researchers, in the mid-80's. Many.

Glanntaj mentions the skin punch biopsy having been avail. approx. 25 years ago.
This is in line with the point I was trying to make earlier.
Fibro researchers were on the research approx. 25 years ago...and saying it is "neurological" to those of us in studies. The skin punch biopsy was also avail. (in some research areas) at approx the same time. It took them an awfully long time to get the two together. (Some of the same centers doing the earlier fibro research also likely has access to the biopsy technology.)

The TEN microscopes, too, are of great importance, as Dany points out!

The politics involved in research, in discoveries, in just which person/people will get the credit is also a factor often mucking up the timelines.

We can celebrate the word is out now and hopefully, this will help settle more of the distinctions between various conditions... in order to better help those suffering?:)

Here's to holding hope! :)
~DejaVu

Autonomic Neuropathy is not in the hands and feet....

Also, I have abnormal sensations all over my body.

Due to the name peripheral neuropathy, it gives the impression that peripheral means peripheral to the body...it isn't. PN and more specifically SNF, is usually found in the hands and feet first, however, it can be found all over the body and can profoundly affect the autonomic nervous system.

Hi, Cycleops -

Yes, indeed - you're absolutely right - Big Pharma has probably made tons of bucks off Lyrica by now. I actually hate to take any meds unless absolutely necessary. I have questioned whether there actually is a fibromyalgia. And I also wonder why when I was growing up and actually had, none of the really elderly people in our town ever had what's become known as Alzheimer's - they didn't even have dementia.

Sheltiemom

I don't honestly know if its PN or fibro.

But its not always lyrica now. I use neurotin for my Fibro. And yes,
I've had a few other test.

But with the tightness in my muscles, and the fact that in some
of the bones, I had other problems first. I can't say yes or no.

Ugh, someday I'll look more closely maybe.

donna

Isn't is more likely....
 

That Fibro is Neuropathy, than Neuropathy being Fibro?

To be under the heading for Fibro doesn't one have to have muscle aches and pains, possibly along with neuro pain?

If one only had neuro pain and sensations with no muscle pain it couldn't be Fibro correct?

I do tend to think--
 

--that these are two seperate entities, though there can be overlap; certainly, if one subscribes to the idea that fibro involves improperly contracting muscle or spasms that produce pressure points and pain, then this pressure can certainly compress nerves and produce neuropathic symptoms.

In other words, nerve pressure certainly can result in neuropathy, but so can a lot of other things (the nerves can be damaged in many ways that don't involve compressive forces).

The theoretical thinking about fibro is going through a lot of debate currently, inasmuch as some have complained it's used as a "catch-all" diagnosis when doctors can't figure anything else out, and becasue it's one of those diagnoses that tends to be applied rather easily to "hysterical women" (not unlike depression and anxiety).

The Wikipedia article on fibro gives a pretty succinct analysis of this:

http://en.wikipedia.org/wiki/Fibromyalgia

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.