How I Came to Be a Fibromyalgia Advocate

Ever since I came out with my latest book – Breaking Thru the Fibro Fog: Scientific Proof Fibromyalgia Is Real! - people have been asking me how I came to be such a staunch believer in fibromyalgia (FM)?  My best answer to this is that I started out as a non-believer, when I first heard of FM, roughly 20 years ago. I wasn’t a zealot about it. I didn’t run around telling everyone they were faking. I just was sceptical.

My disbelief stemmed from having spent four years in medical school, followed by three years as an Internal Medicine resident, and never once hearing about fibrositis or fibromyalgia. Not once! In fact, it wasn’t until the last two weeks of my final year of Internal Medicine training, SEVEN years after I entered medical school, that I heard either term... and that was almost by accident. So why should I believe in a disease that none of my many teachers had thought to mention over my seven years of medical training? I HAD heard about something called somatoform disorder, which refers to ‘psychogenic disease’. That, truly, is what I thought FM probably was, back then.

But then I entered into a 2-year Rheumatology training programme to become an arthritis specialist, and I started seeing FM patients. At the hospital where I did my training, in London, Ontario, hundreds of them were being seen in the Rheumatology clinics. And the first thing that struck me was how psychologically normal many of them seemed to be. Some were depressed. Some were anxious. But many were neither. If FM was psychogenic, why weren’t ALL FM patients a bit loopy?

I also started to notice that all these patients seemed to complain of the same things... not just widespread pain, but overwhelming fatigue; sleep that just never refreshed them no matter how long they were in bed; headaches; migraine headaches; problems with short-term memory and concentration; numbness in the fingers; muscle fatigue rather than true weakness; various bowel and bladder complaints... and on and on.  And I thought... if everyone was just a hypochondriac, how could they possibly all be selecting the same symptoms to complain of? Could there be some book or booklet out there that all these patients were reading so they all knew exactly how to act and what to say when I saw them?  Of course, I rejected that conspiracy theory at once... and that was a big first step towards me believing in fibro.

Another thing that was instrumental to me coming to believe was the undying belief in FM that I saw in one of my mentors, Dr. Manfred Harth.  Dr. Harth had been the long-time Head of the Rheumatology Department where I was training, and he was perhaps the most logical-thinking person I’d ever met. He NEVER seemed to rush to conclusions. He ALWAYS looked at things from every angle. He was EXTREMELY well read in his field. And HE believed in fibro.

And so it was that, when I finished my Rheumatology training and decided to go even further to earn a PhD degree in a field of medical research called Epidemiology (the study of epidemics and other disease in populations), I decided to look at FM in a large, general population study (the largest general population study on FM done anywhere in the world). And I asked Dr. Harth to be one of my PhD supervisors. As I studied research techniques and did my own doctoral research over the next 6 years, I observed three additional things that brought me to where I am now.

One was how amazingly zealous and hateful some anti-FM critics seemed to be. In medical journals, I saw fibromyalgia called such nasty things as ‘a common non-entity’, ‘an illusionary entity’, ‘the syndrome of feeling out of sorts’, ‘the disease with no clothes’, ‘a fabrication of a rich, industrialized Western society’, and ‘big business for plaintiff lawyers’. And yet these zealous, anti-FM critics virtually never offered one scrap of research evidence to support any of their conclusions.

A second thing I noticed was the growing body of published scientific research that countered all the arguments these vocal anti-FM critics gave for not believing in it.  If, for example, FM only exists because of our rich, highly-insured industrialized Western society, WHY is it twice as common in poor countries like Poland, Pakistan and Bangladesh, and in areas like the slums of Rio de Janeiro, than in the U.S.A. or anywhere in Western Europe?  And HOW could it possibly have existed in the 8^th and 9^th century at the time of Charlemagne, or affected Florence Nightingale and Alfred Nobel (for whom the various Nobel Prizes are named) in the 19^th century? Did insurance even exist back then?

Then I started to see the results of my own scientific research, including one study I did (along with Dr. John Thompson) in which we found that FM is common in the Amish who live in South Western Ontario; in fact, more common than in their non-Amish neighbours. How could that be, if FM truly is ‘compensation driven’, since the Amish refuse to buy into any insurance policies? And, in another study, contrary to the often-voiced anti-FM opinion that giving someone the fibromyalgia label makes them ‘behave sick’, I discovered the reverse to be true... in 100 randomly selected adults with FM identified in a general population study in London, those who were diagnosed with FM at the start of the study did NOT get worse; if anything, they improved slightly over 3 years of follow-up. And I found that only one third of individuals with FM were clinically anxious or depressed, clear evidence against FM being CAUSED by anxiety or depression.

And a third thing I noticed over my years of study was that fibromyalgia was being held up to a higher level of scrutiny than almost any other condition. For example, how many professional athletes aren’t playing right now (though they’re still being paid) because they have ‘post concussion syndrome’? I, personally, don’t disbelieve them. But is there any more evidence supporting their symptoms than for those who suffer from FM? They have a headache... prove it!  They feel dizzy and disoriented... prove it!

It was the tremendous injustice of denying rights and respect to those with FM, rights and respect that are readily afforded to people with almost any other condition, that led me to write an editorial, published in the Journal of Rheumatology in 2004, called Fibromyalgia: The Answer Is Blowin’ in the Wind.  In this paper, I borrowed Bob Dylan’s words and asked: How many times can a man turn his head and pretend that he just doesn’t see? Now, seven years later, I have expanded that paper into a book, written in language than anyone can understand, again asking these same questions.  And once again, as I reviewed the even more recently published research on FM to write this book, I found that the evidence had become overwhelming. Now, researchers have almost certainly identified where the pathology is in those with FM. It exists in a part of the brain called the mid brain, where abnormalities can be seen chemically, in electrical brain-wave activity, and in specialized images called functional magnetic resonance imaging (fMRI) and positron emission tomography (PET) scans. This is part of the brain that regulates the body’s perception of pain, and serves like a kind of on/off switch, turning pain on, but then off again. Pain, after all, is useful. It tells us not to put our hand into a fire. But we don’t have to have pain for hours to tell us not to touch a live wire a second time... one brief shock is enough. In other words, in FM, this pain on/pain off switch that exists in the mid brain doesn’t work right.

Despite all this evidence, FM naysayers abound. And THAT is why I decided to write Breaking Thru the Fibro Fog.  Research HAS broken through much of the mystery surrounding FM. Scientifically-supported explanations exist to explain the FM patient’s pain, and fatigue, and problems with memory and concentration. How can doubters continue to spout their hateful anti-FM rhetoric?

I begin my book by again borrowing the immortalized words of Bob Dylan, this time asking: 

How many ears must one man have before he can hear people cry?

Kevin White, MD, PhD
www.thefibrofog.com