My two youngest boys still live at home and both are heavily into watching the NBA basketball playoffs right now. Each evening, somewhere between 8 and 9 PM, they flip on the TV to some sports channel to watch the various teams slugging it out. But what would happen if they turned to Channel 30 and there was a game about to start... but neither team was willing to touch the ball – one team saying they’ve been playing the game too long and no longer want to; and the other not wanting to play because it just seems so darn difficult to win? And so, as everyone else watches in stunned silence, both teams line up at either sides of the court, not daring to step back onto the floor... and the ball lies immobile, untouched, and unwanted at centre court.
Something very much like this is happening in Medicine right now. The ‘teams’ are rheumatologists on one side, and neurologists on the other. And the ball that nobody wants is that sadly-misunderstood, sorely-disrespected, and often-disbelieved chronic pain and fatigue condition called fibromyalgia.
Why don’t rheumatologists want to play this game? For about four decades, they’ve been at the forefront of fibromyalgia treatment and research. But recently, that research has led the majority of fibro experts to conclude that fibromyalgia is not, as the name implies, a disease of muscles and fibrous tissues at all – and joints, muscles and fibrous tissues are much what rheumatologists treat. Instead, fibro is now largely regarded to be a neurological disease that affects certain parts of the brain and spinal cord that are responsible for interpreting and determining pain responses, as well as perhaps nerves themselves. We can actually SEE brain changes on certain specialized scans now, like PET scans and functional MRIs that show not what the brain looks like, but how active different parts of it are. And, to put it a tad over-simplistically... pain lights up! Because of this relatively-recent discovery of the predominant role of the nervous system, many rheumatologists are saying they no longer treat or even assess fibromyalgia anymore; and others are going so far as to hand the ball over to neurologists. “It’s your ball now!”
But, other than a small number of neurologists who call themselves functional neurologists, most nerve doctors don’t want fibro. Why not? Well, because fibro has proven, over the forty or so years during which rheumatologists and others have been trying to treat it, to be difficult to treat. Helping the fibro patient is no slam dunk. There is no insulin, as there is for diabetes. The list of drugs that are still prescribed to treat fibro is a very long one, which includes newer drugs targeted towards so-called neuropathic (nerve disease-related) pain, but also muscle relaxants, anti-depressants, anti-seizure medications, anti-inflammatory drugs, and both narcotic and non-narcotic painkillers. And there’s also physiotherapy, and massage therapy, and pool therapy, and occupational therapy, and relaxation techniques, and biofeedback, and cognitive behavioural therapy, and a host of other alternatives that should be considered. And many patients respond only partially, if at all, to these treatments; some are unable to tolerate any kind of medication or treatments like massage or exercise; and some actually get worse over time.
Adding to the complexity of treating fibro is that pain is NOT the only troublesome symptom. Fatigue is equally troublesome. And there are sleep problems, and mental fogginess (the so-called fibro fog), and headaches of all kinds including migraines, and irritable bowel syndrome, and intolerance to cold, and on and on. And many of the new kids on the block, the neurologists, want no part of this. “Take your ball and go home!” they say.
So who should treat fibro? Who should follow fibro? Who should continue to research fibro? Rheumatologists? Neurologists? Neither? Both?
My answer is... both. And I’ll tell you why.
There is no denying that the overwhelming body of evidence that currently exists points to fibro being much more a neurological than rheumatological (arthritis-related) disease. And, unquestionably, neurologists are better at managing and researching most neurological diseases than any rheumatologist.
And their reluctance to treat a difficult-to-treat condition doesn’t fly either. How easy and satisfactory is multiple sclerosis to treat? What about ALS or Alzheimer’s or Pick’s Disease? And did Christopher Reeve’s first Neurologist say – “Sorry Mr. Reeve. But your condition isn’t going to be easy for me to treat... so see ya later”? I hope not.
They might say – “but we’re not that familiar with the tender point examination.” But the neurological examination is AT LEAST as difficult to learn as the musculoskeletal exam. And how hard is it, really, to memorize nine different paired points (one on each side, right and left) on the body to push on? Surely, that’s not too much to ask of a medical specialist, even if they are years into their career. Besides, the American College of Rheumatology has just endorsed new criteria for fibromyalgia that ‘do away’ with the tender point examination (which is another thing I disagree with, and have written about, by the way).
On the other hand - and this is my major beef with rheumatologists refusing to see fibro patients - whether fibro is a neurological disease or not, it often does not occur in isolation. Those who have fibro have an INCREASED risk of a host of other, mostly rheumatological conditions - like osteoarthritis, and rheumatoid arthritis and lupus - which most neurologists would not feel qualified to treat or even diagnose. And what about the even more common localized musculoskeletal problems that co-exist with fibromyalgia – like shoulder tendonitis, tennis elbow, heel bursitis (also called plantar fasciitis), and patellofemoral syndrome? I once had a formerly very active elderly fibro patient whose disease flared up, big time, all because he developed bursitis in one heel and could no longer do his daily 4-mile walks. Luckily, I diagnosed this right away and got him to see both a wonderful occupational therapist and an exceptional foot specialist, named Dr. Potter, who certainly seemed to do magical things with feet. What would have happened to this elderly but formerly very active gentleman had his heel pain just been attributed to his fibro?
The fact is that fibromyalgia is a complex, multi-systemic disease that remains relatively poorly understood and managed. Many patients can do well, but this typically requires the efforts of several dedicated healthcare professionals, in addition to the patient’s own commitment to do as much as they can for themselves. This requires education. This requires knowing what they are dealing with... not just the fibro, but other conditions that might co-exist with it.
From a research standpoint, and as terrible a disease as it is, fibromyalgia is a golden opportunity for researchers to come to a better understanding of pain. I am convinced that, one day, some researcher or research team will win a Nobel Prize for their pioneering work towards understanding pain in conditions, like fibro, in which there is no swelling or broken body parts to explain it. Am I dreaming to hope that one day the team hoisting that honoured prize will include both a rheumatologist and neurologist, as well as a few others too?
In the meantime, rheumatologists and neurologists both standing idly on the sidelines refusing to play ball will achieve nothing good. Patients will go untreated and research will remain undone. And this will affect not only fibro patients themselves, but also their families, their friends, their employers and co-workers, and both the health care system and society as a whole.
And if all that happens... nobody wins!