Monday, 18 June 2012

Article Published

In case any of my blog-readers are interested, I just had an article I've written published in the Fibromyalgia Chronic Pain Association magazine called Fibromyalgia & Chronic Pain Life. It's the same article about Who Should Treat Fibro: Rheumatologists or Neurologists that's listed below. But the magazine has some other great articles too. So I encourage you to check out the FMCPA site.

Anyway, here is the magazine cover, etc.

















Again, if you can't read the article here, because the print is too small, just scroll down a few posts to find it as a blog that I posted here on June1st. Either way, I hope you enjoy it.

Kevin

Kevin White, MD, PhD, multiple award-winning researcher, author, teacher & speaker

Friday, 15 June 2012

Friday, 8 June 2012

NEW YOUTUBE VIDEO - WHAT FIBRO FEELS LIKE

Here is my latest video... a short but I hope poignant little video that looks not only at what fibromyalgia feels like, but how it feels to have fibro and not be believed.

I hope lots of non-believers and people on the fence get to see this one.


Note: No beanie babies were actually injured in the making of this video.


By the way, the song you're hearing is one I wrote and recorded to remember the 14 young women who died and 15 who were injured at Montreal's Ecole Polytechnique in 1989. You can listen to and download this song, for free and in its entirety, by going to the homepage of my website
and scrolling down to the bottom right.

If you REALLY like the song and would like a CD of my music, which I recorded with my band WORTLEY ROAD, and which includes the song you just heard plus 12 others (10 of mine and two by the extremely gifted singer/songwriter and close friend Johann Kinting), go to


and scroll down until you see the cover:



The song is called DANS LE CIEL. And the CD is called GHOSTS OF THE CPR and features 4 Juno Award winners, plus Johann, myself  and Canadian icon James Gordon. Some other songs from that album are in my blogs (if you scroll back to some older posts).

Kevin

Thursday, 7 June 2012

FIBROMYALGIA & THE HIDDEN 'HOW TO' (What Harry Potter and Fibromyalgia Have in Common)

In April, I was off in Jolly Ol' England giving a series of talks in the lovely English Channel-side town of Chichester. About a month before I left, I was asked to come up with a name for my talk. So I sat down and did some brain-storming.  I wanted to make the talk reflective of being in England, especially since this was my first time there. But what did I know about England? Okay... they speak English. But that hardly seemed to help. Then I thought about Shakespeare and Sir Arthur Conan Doyle (the creator of Sherlock Holmes), but I still was not inspired. But then I thought of HARRY POTTER, and was immediately keyed in. It was PERFECT! And THAT is how I came up with the name of my talk.

You see, J. K. Rowling had her HARRY POTTER & THE PHILOSOPHER'S STONE; and HARRY POTTER & THE GOBLET OF FIRE; and so on.

So I came up with FIBROMYALGIA & THE HIDDEN 'HOW TO'. Pretty snappy title, don't you think?

“But what in blazes is a 'how to'?” you ask.

I will tell you. But first, let me go back - way, WAY back to my time in medical school, when dinosaurs still roamed the Earth and you didn’t need a bloody menu to order a cup of coffee. Over my four years in medical school, I was called to learn more stuff about more stuff than humanly possible - about thousands of different diseases... and hundreds of drugs... and dozens and dozens of ways to lose at hacky-sack (a game we used to play at lunch break in years #1 and 2). No matter how uncommon a disease was, our professors insisted that we learn all about it, as if our very lives hung in the balance. We even had 20 hours of lectures on parasitic diseases that almost exclusively occur in Africa. Heck! Rare in Africa and never seen at all over here... but learn all about it anyway!!! And within that endless diatribe of disease names and parasites and parakeets, I never once heard about fibromyalgia. Not once. Of course, it wasn’t called fibromyalgia back then. No one knew how to spell fibromyalgia in the 1980s, so they called it fibrositis. But I never even heard about THAT.

 And then my years of medical school ended and I was off to San Francisco to do a 3-year residency in Internal Medicine at a Stanford-affiliated hospital... and I STILL never heard about fibrositis. Not until the last couple of weeks of my very last rotation, when I heard about it elsewhere, and totally by accident.

I was attending a 2½ day medical conference for arthritis specialists in Napa Valley, California, the heart of wine country (so it’s amazing I remember anything at all). Over the first 2 days of the conference, I heard about rheumatoid arthritis, and lupus, and osteoarthritis, and psoriatic arthritis, and a little white mouse named Gilbert... but NOT fibrositis. It wasn’t until the final lunch on the final day, when there was a guest speaker speaking about a strange new disease, that the issue ever came up.


Now, I’ll be honest. If it weren’t for the fact that I was a dirt poor medical resident who couldn’t afford to pass up a free lunch even if it were dog food, I would have left the conference early to get home before rush hour, like almost everybody else. But I stayed for free sandwiches, and then half-heartedly listened to this moron talking about this new disease doctors couldn’t even see, while scarfing down a couple of free desserts. And, to be even more honest, I can’t remember for sure, but I probably didn’t even believe him. And I didn’t think about fibrositis again, until almost a year later.

 By now, I was 8 months into a 2-year Rheumatology fellowship program to become an arthritis and rheumatism specialist. And that’s when I met my first ever fibrositis/fibromyalgia patient, my first day working with a doctor who specialized in this condition. This patient was just like what that doctor had described at that final conference lunch... she hurt all over, was extremely fatigued, had headaches and mental cloudiness and other symptoms too... and nothing OBJECTIVE showed up on physical examination, and all labs and X-rays were normal. I didn’t know what to believe.  But then, later that same day, I saw my second fibro patient... who complained of the same things, and also had nothing OBJECTIVE on physical examination, and all labs and X-rays normal. And then I saw my third... and my fourth... and by the time I’d been in this clinic for a few weeks, I’d seen dozens... and THEY ALL LOOKED THE SAME. And that’s when I had a revelation:

Either fibrositis was real... OR there was some magical little pamphlet or book floating around telling everyone how to fake it. Not only that, but given statistics that suggested that fibro was quite common, this book had to be impossible for doctors, but ridiculously easy for everyone else to find.

And so I put all my superior intellect and training and best hallucinogens on the line and decided on the next logical step... I was going to FIND that book. Of course, we didn’t have Google back then, so I’d just have to go door to door.  I knew I might get beat up a few times, but I was a dogged little fellow and knew I couldn’t fail. But first, I knew that I couldn’t just waltz into people’s homes without a clear idea of what I was looking for. So I started brain-storming for titles. What might a ‘how to fake fibro’ book be called?

After puzzling and puzzling until my puzzler was sore, I came up with the following, inspired list:

·         How to Fake Fibrositis
·         Fake Fibro for Fun & Fortune
·         Fame, Fortune & Flatulence: A guide to faking fibrositis & irritable bowel syndrome
·         Fibrositis for Slummies
o    I was SO close to a bestseller on this one.
·         Fibrositis for Dumbie Doctors
·         Woe Is Me, Fibro Is Me: How to get sympathy from people you don’t even KNOW!
o    I had to discard this one after I met a woman who said: “My doctor says I’m just doing this to get sympathy. Sympathy from who? My husband’s left me. I live alone, have no family, and almost never feel well enough to leave the house!” She didn’t mention that she had no money to spend if she went out either.
·         What to Say & How to Act to Piss Your Doctors Off
And, my personal favorite

Beware that thumb!!!

Well... despite looking high and low, I never DID discover ANY of these books... and came to the painful realization... that fibro had to be real. It’s lucky I did too, because right about then I met a big burly and very angry female patient who said this:

“They’re still LOOKING for the head of the last doctor who told me that my pain was all in mine.”

      And that is how I ultimately came to be a fibro believer.
  
      And that, my fine feathered friends, is why I still have my head!  

Kevin White, MD, PhD

Friday, 1 June 2012

RHEUMATOLOGISTS VERSUS NEUROLOGISTS... WHO SHOULD TREAT FIBRO IS NO SLAM DUNK!


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!