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.
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.