There
are few things in life that make me mad! One is how the only TV commercials
with anyone even remotely close to my own age are those where they’re either selling
some medication like Viagra or life insurance. Another is how the word
‘phonetics’ isn’t spelled phonetically.
A
third thing that upsets me even more than these things is the concept of
‘fibromyalgianess’, a term coined by Dr. Fred Wolfe a couple of years ago that,
in a recently-published report called “The Role of Opioids in the Treatment of
Chronic Pain”, was defined as the
tendency to respond to illness and psychosocial stress with fatigue, widespread
pain, a general increase in symptoms, and similar factors.
Besides
the fact that it’s hard to pronounce and even harder to spell, there are many things
I dislike about this term. In fact, there are so many things I find distasteful
about it, it’s hard to know where to start.
So
let’s start by talking about lupusness.
Say
what?
I
say let’s start with lupusness because, when Wolfe first coined the term fibromyalgianess, he justified it by
characterizing fibromyalgia as a poorly-defined condition with a wide range of
symptoms that are inadequately explained. But what about lupus? It, like
fibromyalgia, is poorly defined. It, like fibromyalgia is a collection of
symptoms that can be so varied, it has been called the “disease of a thousand
faces.” It, like fibromyalgia, has symptoms like pain, fatigue, and problems
with cognition, all of which are subjective. In fact, up to one half of
patients with lupus meet the criteria for fibromyalgia. Finally, it, like
fibromyalgia, is diagnosed not on the basis of a confirmatory blood test or
X-ray, or any other test, but by seeing whether patients meet enough criteria
to make it likely. In other words, doctors look at a list and check the ones
the patient has. If they have two, the patient has possible lupus; three means
they have probable lupus; and four or more means they almost certainly have
lupus.
So
why don’t we talk about lupusness, since lupus is so much like fibro? The
answer to this question is two-barbed — ignorance and prejudice — and each one
feeds the other.
The
ignorance lies in the belief that there continues to be no objective evidence
of physical disease in patients with fibromyalgia; in fact, that it is
primarily a psychological illness. To see that this belief is prevalent even
among physicians, you need look no further than the definition of fibromyalgianess itself, which equates
the symptoms of fibromyalgia to a response to illness and psychological stress.
You aren’t sick; you just aren’t responding right.
But
evidence of this rampant disbelief also comes in research form, with recent
surveys conducted in Canada and the United States revealing more than one third
of family physicians believe that fibromyalgia patients are ‘malingering’,
which is med-speak for ‘faking’; that one in six pain specialists agree with
them; that more than one third of rheumatologists feel that it is ‘primarily
psychological’ and more than two in three feel that they no longer need to see
fibromyalgia patients; this is despite the fact that rheumatologists like Dr.
Hugh Smythe and Mohammad Yunus were instrumental in gaining recognition of
fibromyalgia as a distinct illness in the first place, back in the nineteen
seventies and eighties, and that rheumatologists have generally been the
primary specialists diagnosing and treating this condition over more than two
decades.
But
is there really no physical evidence of physical disease? This is where the prejudice creeps in, as so
many with their own agendas purposely choose to ignore a rapidly rising
mountain of research evidence demonstrating numerous physiological and
anatomical abnormalities in those with fibromyalgia, ranging from
objectively-measured alterations in various central, peripheral and autonomic nervous
system functions; abnormal brain activity during sleep; abnormal levels and
responses to various stimuli of a wide range of hormones that include cortisol,
thyroid hormone, parathyroid hormone, growth hormone and others;
physically-measureable alterations in skin temperature and its responses to
various stimuli; and abnormalities in several different immune functions. The
list goes on... and on... and on. In fact, there is far more evidence of
physical disease for fibromyalgia than there is for several other
well-recognized and universally-accepted conditions like post-concussion syndrome. But who would ever question any of the
multi-millionaire professional athletes who have needed (and been granted,
without question) time off from their profession until their dizziness, their
headaches, their sensitivity to light and sound, their nausea, and their
general inability to function (all totally subjective and non-measurable
symptoms) have resolved?
So
shall we speak of post-concussion syndromeness then? And if not, why not?
The
answer again comes down to those same two things: ignorance and prejudice.
Lest
physicians and researchers forget, history is filled with examples of
conditions that used to be presumed ‘primarily psychological’ until research
proved otherwise. Only about three decades ago, stomach ulcers were often
attributed to stress, until two physicians in Australia identified a bacteria
that causes them. Of course, many disbelieved their research for years. Why?
Because this explanation for ulcers did not fit with what they had learned in
medical school three decades earlier.
Thyroid
disease in the absence of goiter used to be attributed to depression, before
the technology was developed to measure various thyroid hormone levels. And
anyone over age 65 is old enough to have potentially heard multiple sclerosis
called ‘psychogenic paralysis’; it was as late as 1950 that a huge symposium was
held in New York City at which a consensus was reached that multiple sclerosis
was a legitimate physical disease, and that these patients weren’t just
‘malingering’.
The
concept of fibromyalgianess is therefore not only ignorant of current research,
it is totally ignorant of the past sometimes sordid history of medicine. How
many more times will we need to learn the lesson that we physicians don’t know
everything yet? And how ignorant, self-serving, and downright mean-spirited it
therefore is to totally ignore all the research that has been painstakingly
compiled on fibromyalgia over the past three plus decades.
There
is no fibromyalgianess... no more than there is lupusness or diabetesness or multiple
sclerosisness or post-concussion syndromeness.
But
there is definitely mean-spiritedness.
And
that’s what really makes me mad about all this!
·
Kevin
White, MD, PhD is a world-recognized expert in fibromyalgia research and
staunch fibro advocate who has won multiple awards for his research, teaching
and books. His most recent book – BREAKING
THRU THE FIBRO FOG: SCIENTIFIC PROOF FIBROMYALGIA IS REAL – has just won a
Reader’s Favorite Book Award and is already selling on 6 continents. It is
available through the publisher at http://wortleyroadbooks.com,
through his website at http://www.thefibrofog.com/,
through my
webpage at amazon, and at all major book chains.
