Is Fibro the new name for Small Fiber Neuropathy?
 

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!!! :eek::eek:
http://dl7.glitter-graphics.net/pub/...g60ronvzl7.gif

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....:o

From what I've seen--
 

--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.:p

........and that's where the 'horse' comes in at, Cy.....http://dl8.glitter-graphics.net/pub/...zu2qvp1d9v.gif

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.

something to read
 

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!

Wow, that is significant! I do feel that fibro is a neuropathy....it has so many components of autonomic dysfunction...and of course, pain. Great work Amit!

This is so interesting, since deltoid fibers are not tested in the SNF biopsy. I have always wanted them to test fibers that are more proximal on me. Maybe I should ask for one of these.....hmmm.

I wonder.... could these Fibro people have been misdiagnosed, with Fibro, and really be PNers? Rather than SNF being Fibro?

This paper discusses nerve root involvement in patients diagnosed with Fibro. It also discusses "triggers", and toxic neuropathies are listed.

http://docs.google.com/viewer?a=v&q=...F3dXWhP5RmYosA

Check the last sentence in the study (I can't seem to copy/paste it)!
"The tests support our theory that the cause of Fibromyalgia is pathology in the peripheral nerve roots."

And this is interesting...the discovery of "hidden" or undiscovered nerve endings in the skin that were not previously known:
http://www.sciencedaily.com/releases...1208083524.htm

And this is a list of discoveries linking several physiological states to Fibro:
http://www.myalgia.com/Pain_amplific...ic_studies.htm
Including elevated levels of substance P in the CNS and elevated activity of NMDA receptors. (perhaps this is why magnesium works for Fibro patients? )

And this link-- Fibro and the eyes... dry eyes, pain, and light intolerance!
http://www.ehow.com/about_5040994_fi...-problems.html

I do suspect--
 

--that many people over the years who have been diagnosed with "fibromyalgia" actually have as yet undetected small-fiber neuropathies, since skin biopsy is still not a test that is widely available (or ven known about by a good number of physicians).

Fibro did become a sort of "catch all" diagnosis for patients who came in and reported severe pain that seemed to have no direct physcial basis. But I had always thought there was some confusion with those who mayhave acutally had neuropathies but were not skilled in describing the exact nature of the pain they were experiencing--neurologicla pain IS difficult to describe, especially for those who have not experienced it before--AND there are many doctors not skilled in listening to what their patients were trying to describe and/or solciting more information from them.

I'm most interested now in the nerve root theory of fibro--there is a category of nerve dysfunction, neuronopathy, that describes problems that stem from damage to the dorsal sensory ganglia (and is common in Sjogren's, by the way) and in which symptoms may be indistiguishable from that caused by damage to nerve fibers farther down the periphery:

http://neuromuscular.wustl.edu/antib...uron.html#sfsn

In neuronopathies, there seems to be an attack directly on the cell bodies of sensory neurons. This can, of course, cause degeneration of the axonal endings as well, which often shows up on skin biopsy as reduced fiber density. The catch, as Hopkins' Dr. Abhey Moghekar once described to me, is that while nerve fibers can regenerate under the right conditions if the cell body is intact, if the cell body dies that nerve is gone forever (though sometimes other intact nerve cells can frow fibers and take over the functions).

Could fibro involve a neurotransmitter imbalance at the dorsal nerve root/ganglia that oversensitizes to pain? That is an interesting question.

I am wondering if it is viral... like shingles! Maybe a virus infection triggers the genetically flawed cells?

Also, recall the genetic testing, of dorsal root damage?
Could be genetic too.

Anyway, it just expands the possibilities and justifies all the complex types and situations people find themselves in, and end up on this board...all with different stories of triggers, trauma, infection, etc.

There are so many things that could cause a widespread neuropathy or neuronopathy the list would be exhuastive. The chemicals we are exposed to in our food, fabrics and medically are just the beginning.

The system could save a great deal of money on Fibro cases by simply doing a skin biopsy. I do think that the skin biopsies could be done in more proximal sites to see if this trends more towards the Fibro like symptoms instead of the typical hands and feet involvement we see with SNF.

I can't believe that more doctors and researchers are not linking Fibro to SNF...especially given the dysautonomia of Fibro.

The issue with Sjogren's is the lack of good criteria. People are diagnosed with NO inflammatory blood markers. I don't have the +SSA and SSB and feel that I dont really meet the criteria for Sjogrens. I am not looking for a label, any label, but if people want a label, Sjogren's is easily proclaimed. Lip biopsy becoming disregarded lately which is good. Sicca is not Sjogren's. Because the criteria are so loose, it is hard to say if Neuropathy is common in SjS or if the 'SjS' the person has is really neuropathy! Without serum markers, likely the seroneg. SjS is Neuropathy.

Sicca is present in many conditions including SNF.

I think in the presence of a +ANA, and -ENA, the diagnosis of UCTD needs to be used. In the absence of both, SNF needs to be explored and SjS should not be bestowed so quickly.

SjS and Fibro are both catch all diagnosis. SjS should not be if they used serum diagnosis.

Attaching Fibro as an additional diagnosis to SNF, SJS or any other diagnosis is a moot point until they figure out what Fibro is, and I have a feeling it is already encompassed in other conditions.

Great conversation!

Why does it take them so long to even check a few skin biopsies?
In my case, I had multiple diagnoses by two researchers, each specializing in his own field. This was in the early 1980's!
This was a collaborative effort, to determine if CFS and FMS were the same or were separate conditions. I had agreed to participate with them and they had diagnosed me with both conditions (according to the definitions at that time).
These were extensive tests for each and they were listening carefully and asking lots of questions. They were in the room together at the time. (I also saw each of them individually for further follow-up.)

These gentlemen were very attentive to the person and to their research and have excellent reputations. They each had kept telling me he knew I had some severe neurological disease they could not yet recognize. (While also tagging me with CFS and FMS at the time. They also had me see some topnotch neurologists for consults then... due to their strong beliefs I truly had a severe neuro. condition underlying it all.)

It was another maybe 12-15 years before I had a skin punch biopsy and they all went wonky when they saw the results. Yet, with even what little they were saying to me about a neuro illness, why did it all take so long?
It is taking even longer for those not in research studies!

Is it true that not all neurology clinics (even at teaching hospitals) actually do the skin punch biopsies as a part of any work-up? Or is it more true they can obtain the biopsy, yet must send it out to a qualified pathologist?

(Our teaching hospital was doing sural nerve biopsies long before doing the skin punch biopsies... even when the skin punch biopsies were the thing to do at other centers. I'll never agree to a sural nerve biopsy again. Over 20 years later, I still have many diagnoses and things keep becoming increasingly overtly neurological... and a mix of all kinds of AI and neuro. "stuff." They just tell me they can't help me, except to try to help me with pain. The truth is, most of the time they try to prescribe, most of the meds make me even worse.)

It is so hard to believe it took so long to do a few biopsies to see what the trend might be with FMS groups! :confused:

I hope they do start offering skin punch biopsies to people with FMS diagnoses.
Everyone deserves to know what is going on in his/her own body, if there is any way to discern this for each individual.

~DejaVu

It would save a fortune to avoid all the wasted testing done for Fibro is they would just do the skin biopsy.

I was undiagnosed for 15 years....told I had fibro even tho I had a clear cut case of Lyme....told I had all kinds of things....not until I had an autonomic episode that resembled a TIA, did I get adequate care and an autonomic test. I had a good cardiologist who suspected dysautonomia and got me to a good neuro who found the small fiber. The autoimmune stuff developed later.

I wonder if there is a lack of availability of TEMs (transmission electron microscopes)? And that is why there are not as many sites for skin biopsies? They are not just found everywhere and need particular support lab equipment and technicians. But I think I have heard of results being done by other microscopes, however the details with TEM are more "detailed".

I'm a retired EMer so am prejudiced and a new member here who also had a skin-punch done but didn't know about the EM connection at the time...it has been good having those results to back me up several times and just for peace of mind. My own EM work was for 17 years but on viruses...we did have some chronic fatique work to do but nothing on FM when I was doing it. But I left that work 14 years ago. (I don't recall seeing anything in the CFS samples we had.)

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.

Basically, I think three broad categories (within which are sub-groups) are being told they have Sjogren's.

One is the Serum Positive Group, which contains those with either a +ANA, with or without SSA and SSB and + Lip biopsy in the mix. Aggressive 'nonerosive' arthritis of the small joints, Sicca and systemic effects such as nephritis, dRTA etc. Many of this group has comorbid small fiber neuropathy.

Another is Sero-negative, and these people have + Lip Biopsy, Sicca....My bet is ALL of these people have PN, likely autonomic.

The other is Sero-negative, with negative Lip biopsy and Sicca....and quite possibly PN

There is a 4th group which if explored would have medication induced sicca. Let's ignore this group...since they usually won't go for diagnostics any way...they just insist they have SjS.

The 3 could be completely unrelated, all 3 have a 'Fibro' like presentation with aches, pains (due to PN), arthropathy due to proprioceptive problems which lead to accelerated joint wear, strains etc, and dysautonomia....therefore appearing very much the same, but, in reality, being very different.

The SjS of neuropathic origin IS different in pathogenesis than the SjS of exocrine and systemic inflammation.....The name needs to be changed. I believe in the near future, 5 years or so....The SjS of the first category will be assigned to the 'Lupus' category, and the idea that Lupus can simply be an ANA+ disease with ALL organ systems affected. I don't believe that Lupus or SjS or any disease can affect major organs and NOT produce small fiber.

I have had Fibro and CFS for over 20 years. If you think fibro is miserable with accompanying Chronic Fatigue Syndrome (my IGF1 or Human Growth level is lowest in my test group at OHSU) then try having 4 spine surgeries in 5 years. The interior scar tissue is really bad in with the mayo-facial pain.

I have a really good Physical Therapist who is manipulating it in an attempt to release the pain and confusion it causes the new places who have to take over the work that used to be done in another way. (like the back rotator cuffs) it causes. The latest, C2 to T3 is beyond imagining.

I have had to have spinal denervations in order to be able to walk upright. I was just told today that my Sleep Apnea may in part be getting worse of the scar tissue and surgeries.

So, do I have Fibro? or these new things you are talking about?