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Old 01-30-2008, 09:58 AM #1
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Default Fibro From PN ??

I was reading on aother BB that a patient who has PN, went to a Rheumy
and was told:
"....He told me that I have developed fibromyalgia due to the pn,..."
I've never heard of this as a development of PN before.
Any experience from anyone?
Just curious.

IMHO, fibro is the newest guy on the block as a catch-all Dx.
It is not Dx'd by any chemical (bloodwork) or mechanical test. Its subjective.

I remember when fibro wasn't even recognized as a legit malady, and
it was difficult to get docs to admit it existed. There was a forum for it here,
and on the OBT(or still is), and there was a lot of complaining about just that fact.
Now Lyrica is advertising on TV as being OKed for the treatment of fibro by the FDA.

Anyway, I'm digressing (who me?), again.
Anybody heard of PN causing fibro?
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Old 01-30-2008, 11:09 AM #2
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to the pain lecture I attended last spring...

Fibro is thought to be central pain disorder, where the amplitude of nervous signals is higher than normal. Like a radio volume turned up very high.
That it has shown to be 8 times more frequent in first degree relatives, and is
now thought to be hereditary. Fibro patients interpret neuronal signals that are typically normal to most people, as painful.

That any TRIGGER, illness or syndrome of pain, will set it into motion.
Arthritis, car accident, huge trauma, intestinal infection (for IBS), etc
is typically needed. So I think PN qualifies as a trigger. But that does not mean PN causes fibro... in everyone. You have to be genetically wired to respond that way.
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Old 01-30-2008, 11:49 AM #3
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Quote:
Originally Posted by mrsd View Post
Fibro is thought to be central pain disorder, where the amplitude of nervous signals is higher than normal. .......and is now thought to be hereditary......any TRIGGER, illness or syndrome of pain, will set it into motion............. I think PN qualifies as a trigger. But that does not mean PN causes fibro... in everyone. You have to be genetically wired to respond that way.
Thanks, Mrs D........do you think a rheumy might arbitrarily attribute fibro to a PN patient, who really doesn't have a family history of pain syndromes- that are not concisely diagnosed?
I mean, if there is some family history, but all illnesses or conditions have been recognized, & treated successfully with no indication of fibro in the past.

I realize that fibro would not have been Dx'd way in the past, as it is not a long-standing recognized affliction/disease/condition.(??)
It seems it is fairly new on the scene and there would be no past history that had been Dx'd as such. It would have to be a determination of a current doc that it had not been recognized, or was thought to be some other condition.(to be considered as hereditary)
As I mentioned, it is not something that can be definitively Dx'd by a blood test
or MRI or CT scan (would it show on a nerve velocity conduction test? If so, it would then be Dx'd by a neuro - wouldn't it?).
It seems it is determined by taking an oral history, putting 2+2 together
and coming up with 5.
From what I've read, many docs don't/didn't recognize it and patients who thought it might be applicable to them, were discounted & treated as if they were 'malingerers'.
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Old 01-30-2008, 12:03 PM #4
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Lightbulb controversy...

There is alot of controversy still about Fibro. The new approval of Lyrica for it, has brought a new crop of argument over it.

Some doctors do not believe it exists, and others do.
And diagnostic criteria have changed. Trigger point analysis is not accepted anymore by the more advanced researchers.

I listened to Dr. Clauw at that seminar. If you google him you will see he is very active in Fibro research.
What I saw in my business was alot of women given heavy duty opiates and amphetamines to offset that, and then antidepressants in high dose and more and more... Dr. Clauw does not believe opiates should be used for Fibro.
So general doctors and/or rheumy's may not treat Fibro properly or even understand it. Controversy swirls everywhere around this subject still.
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Old 01-30-2008, 01:47 PM #5
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Uh, I have a question.

How can a doctor say something does not exist?? Take Fibro for example.

Over 8 years ago, there was a tv show called Strong Medicine. I will never forget this episode. The doctor was played by Janine Turner.

A woman is brought in crying hysterically in pain and she tells them "I have Fibromyalgia". The doctor just looks at her.

The nurse takes the doctor aside and says "what do we give her, she has Fibromyalgia?" and Janine Turner responds: 'there's no such thing as Fibromyalgia, it doesn't exist". The nurse then said 'But she's in pain, we have to DO SOMETHING!!!"

The main part of this episode was teaching Janine Turner that this woman had a real pain issue and by the end of the episode, she was given morphine.

I remember saying "How can a person have fibromyalgia, and a doctor says "there's no such thing", and then give the person meds for their pain??

I just don't get it.

A condition either exists or it doesn't, right? I mean, a person is not going to come in to the ER writhing in pain and make the whole thing up.

So how come now (and I saw the commercial for Lyrica), how come NOW there is an acknowledged condition known as fibromyalgia (I know two people who have been diagnosed by the way).

If this is so, how can some physicians still say "it does not exist".

Please someone explain this way of thinking to me.

I mean, physicians go to med school, they must learn about this, no???
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Old 01-30-2008, 02:29 PM #6
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Default I for one believe Fibro is real...

But with many docs, their education about it has not advanced to current standards. For some professionals it ends after med school/internship or residency. No new thinking whatever. Some of us are lucky enough to have docs that don't close the book once in practice.
Here is an interesting site: http://www.fibromyalgia-symptoms.org/index.html
The symptoms, diagnosis, and associated conditions aspects are interesting and enlightening. These three portions of this site clear up many aspects of FM that overlap, or not with PN. Doesn't mean it doesn't hurt?
Don't forget, Neuropathies were merely 'in your head' conditions/diseases/symptoms too, until fairly recently.
I know several fibro sufferers who are as bad off as we are, but in slightly different ways and I truly feel for them.
Mrs D, a question....is this one of those pain reflex reactions where the pain signal is triggered to ON and doesn't turn OFF? That's what I'm getting, sort of like some chronic muscle spasms, except it's 'nerve spasms'?
I hope this does [or doesn't]clarify things to some degree. It does for me. I think.
Good thoughts to all! - j
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Old 01-30-2008, 04:36 PM #7
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Default What I think has been happening--

--is that patients are presenting to doctors with a pain syndrome that does not have any specific, detectable trigger or etiology--no injury, no demonstrable nerve damage, no obvious arthritic inflammation--and so doctors, being "show me" people, are at somwheat of a loss as to how to diagnose it.

Since they have "heard", or been told by patients, that many of these pains seem to be primarily muscular or joint located (that's the trigger point theory), they group them into the large category of "fibromyalgia"--literally, pain of the muscle fibers--and that's the diagnosis they are given. This is often done for the sake of convenience (and often, insurance reimbursement), to give people a handle on and a conceptual framework for their symptoms.

Now, I don't know if fibromyalgia is the most appropriate name for this condition--if, indeed, it is one condition. Something real IS occurring to these people--they're not faking or malingereing--but I suspect it's not always the same thing--or even, often, very similar things.

The fibromyalgia controversy has echoes of the chronic fatigue syndrome controversy of a few years back--indeed, it may have even replaced that one as a syndrome of mostly young, middle-aged, over-stressed females. In both cases, attempts to find clinical commonalities among the sufferers of each label went along more easily than attempts to establish laboratory commonalities. (At one time, chronic fatigue was thought to stem from reactivated Epstein Barr infection, until it was realized demographically that many people ostensibly with chronic fatigue did not have laboratory evidence of the reactivation and many with lab evidence of reactivation did not complain of chronic fatigue symptoms--the coorelation was just too weak.)

I suspect that Mrs. D's ideas have some merit, and that there also may be an autoimmune component to these symptoms, but I don't know if the cluster of symptoms is reducable to a term like "fibromyalgia", even though the term is being used as a "syndrome" rather than a "disease". In a similar way to how many now think about cancer, we may be looking at a cluster of distinct entities that just happen to have symptomological overlap, and that may have diverse etiologies and triggers.
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Old 01-30-2008, 04:54 PM #8
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Lightbulb here is an example...

of the controversy:

http://query.nytimes.com/gst/fullpag...52C0A96E9C8B63

For fibro..there are no tests...no way to prove it exists as yet.
Hence the controversy. Some doctors are cashing in on Fibro..I have seen the horrible drug abuse they create.

I myself had a possible fibro diagnosis many years ago, when my thyroid was dying, and I had pain in my feet and terrible muscle aches. Most of that is gone, with identifying the culprit and doing a very aggressive nutritional intervention.

I still have my arthritis...but it is manageable still.
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Old 01-30-2008, 05:03 PM #9
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The conditions of Enthesitis/Enthesopathy are almost never heard of these days. Where did they go?

If one compares the symptoms and the manifestations, they seem identical to Fibro. Enthesitis is the inflammation of tendons and ligaments, -opathy is the degeneration of the same.

I don't know why these known conditions get caught in these diagnostic whirlpools and disappear to re-emerge downstream as fibro.

It makes sense that females would suffer from ligamentous conditions as females are subject to the hormone Relaxin that allows for the fetus to grow and for females to give birth. Joint laxity in females allows for that process and it is not inconceivable that somewhere along the line, it becomes problematic.

Many people with Fibro are not offered epidermal nerve fiber density testing, and could conceivably have SFN, others could have the multitude of conditions that all of us know can take years and years of dedicated diagnostics to find, and until then, Fibro is what their malady is named.
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Old 01-30-2008, 05:26 PM #10
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Default Humm...Or...better

yet, cursed?
I for one am eternally grateful to all the PN sufferers from either diabetes or chemo side effects who have spurred research into a far faster pace than would otherwise occur. Obviously, the current leading PN association cum 'leader' is interested in some but less universal 'research' options. Organizations such as NORD [rarediseases.org] and many other resources show far more advocacy on our behalf.. Yes, I admit totallly...I AM getting off topic, but, in terms of our, OUR keeping an eye on other medical conditions/issues/diseases...whatever...IT IS IMPORTANT! Especially that we know about what is going on with these issues, but also how it can and will impact us!
The whole diagnosis problem [with all the shortfalls] is totally compounded by the lack of medical education UPDATEs on the part of soo many medical professionals.. It makes finding a really GOOD, KNOWLEDGEABLE practictioner in any field a rare and treasured find -for us!
Honestly, common sense would dictate that IT SHOULDN"T BE SOO HARD TO FIND/DO! So, someone tell, me, other than 'beauraucacy' why, is it not so? I guess I would also have to ask the AMA why they do not have some sort of patient feed-back or consumer quality control format in which patients can ask relevant but not necessarily legally connected issues....as in 'What are the standards for a doctor in this particular specialty?-What kind of expectations should I have for a professional in this field..and if same physician doesn't show such standards...what can I do? Am I merely short sheeted? I do know that I've felt that by some 'former' neuros, but how does one complain constructively...?
Back to fibro?
I am feeling dense, Is a Fibro spasm similar to a muscle spasm in that it doesn't 'turn off' unless manipulated? - I've had these,, and big-time. I am merely trying to make pain 'connections' in relation to pain hither and yon. Thanks all! - j
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