Friday, 23 December 2011

‘Twas the Night before Christmas (A Tale of Four Pillows)

‘Twas the night before Christmas, and you’re in your bed
Another long night seems to beckon ahead.
Your shoulders are aching as they always do.
Your neck and your low back are hurting you too.

These pains - every one of them keeps you awake.
Just how many more sleepless nights can you take?
You’d love to sleep on your side, if you could.
But the weight on your shoulder, it just isn’t good.

You’d sleep on your back if you could, but no way.
You know you’d end up on your side anyway.
So you lie there and wonder and worry and fuss.
Is there no hope at all for people like us?

But here is a secret I hope you will try.
“It’s worth a shot. It works sometimes,” say I.
All it takes is four pillows. That’s all... only four.
If this works you’ll get sleep and maybe much more.

First, find a thin pillow that’s so, so soft.
The thinnest you have. The softest you’ve got.
And then place it not to use for your head
But a bit further down along on your bed.

In fact, it should be right under your chest.
Tucked up in your arm pit a bit - THAT is best.
It will lift your weight up off your shoulder... it’s true.
It’s amazing just what that slight difference can do.

The last three pillows – two normal, one thin
Put down to support your head, neck and chin.
For full neck support, to fill all the space
Tuck them up to your shoulder, angled slightly in place.

Use the line of your jaw, to angle them right.
Those pillows should snuggle right up to it tight.
Now... try it. Lie down - whate’er side you choose
Put your hand by your head... close your eyes... and just snooze.

It doesn’t work every time; but I say
I’ve seen it work more often than not in my day.
You may ask “just why does it work? Tell me why.”
“It’s all in the physics” will be my reply.

That pillow beneath you has straightened your back
And lifted the weight off your shoulder by half.
Your neck’s now supported; and so too your head.
And now you’ve a place for your arm on your bed.

So this Christmas Eve, as you’re trying to sleep,
I hope you’re successful. I hope your sleep’s deep.
And as you sleep deeply, or even sleep light.
I say Merry Christmas, and to ALL a good night!

Copyrighted 22-12-2011, Kevin P. White, MD, PhD

Friday, 16 December 2011


If you are reading this, there is a good chance you either have fibromyalgia yourself, or love someone else who does.  You are filled with questions.  You are looking for answers.  You are grasping for any little bit of hope you can find.

            Over the years, I have spoken to tens of thousands of people like you; people who have gathered in auditoriums to hear the fibro expert speak.  Never has there been an empty seat.  Why?  It’s not my looks.  It’s not even what people think I might say.  It’s that people like you are desperate.

            Fibro is a terrible disease.  But it also is more than a terrible disease.  It is more like a curse.  You (or your loved one) feel like crap.  You feel like something the cat dragged out (because no self-respecting cat would EVER drag you in). But you look good.  Everyone tells you how great you look.  “You’re looking great today!  How are you feeling?”  But they don’t really want to know.  Not really.  They want you to say you are feeling better.  Things are coming around.  Everyone is convinced you are just depressed.  And hey! Everyone gets depressed once in awhile.  And that, one day, you’ll just snap out of it and become healthy and active again.

            In your heart, you hope they are right.  But you know they are not.  They can’t be.  How could depression cause such terrible pain?  And such horrible fatigue?  And everything else?

            I have stood up in front of halls packed with hundreds upon hundreds of people like you.  I have looked into expectant faces.  Faces hoping for a miracle cure.  Hoping for magic.  And I have always have started by telling them the same thing…


          That’s right.  I have NEVER treated fibro. 

            This invariably causes a bit of a stir in the crowd.  One guy yelled out… “So why the #*%#@ are you here?”

What about you?  Are you shocked?  Are you angry?  Are you wondering why the heck you ever picked this paper up? 

          Don’t be. 

I am not prejudiced against persons with fibro, as my statement might be construed.  I say it as a point of fact.  I’ve never treated fibromyalgia.  I’ve never treated osteoarthritis either, even as an arthritis expert.  Or rheumatoid arthritis.  Or tendonitis.  Or neck pain.  Or back pain.

            I’ve never treated any of these diseases. 

I’m proud that I never did.


          If there is one absolutely essential message that I want anyone reading this to get, it is that treating the person, and not the disease, is the only way to go with fibromyalgia. 

            If we had a cure for fibromyalgia, we could treat the disease.  The doctor could be as cuddly as barbed wire.  But if she or he could prescribe ten days of some pill that would make all your pain and other symptoms go away forever, who the heck would care?

            But we do not.  We don’t have a cure for fibro; at least, not one that I or any of the scientific medical community is aware of.  And I would be wary of anyone who tried to claim otherwise.

            Some drugs help. Amitriptyline (Elavil) was the initial darling doctors had, and every fibro patient got it because of some clinical trials conducted back in the 1980s that showed that it helped somewhat. But the only studies that looked beyond about one month of treatment found that amitriptyline often stopped working. And many patients had side effects like increased fatigue, mental fogginess and weight gain.

Amitriptyline was NOT the answer for most. Cyclobenzaprine (Flexeril) emerged as a second option. As a muscle relaxant, it actually had some pain-killing qualities; but it, too, only helped a small minority of patients long-term.

Anti-inflammatory drugs sometimes helped, but there were risks associated with them, like ulcers and high blood pressure, among others.  And Tylenol usually was not strong enough.

Then came newer, more fibro-specific drugs like Neurontin (gabapentin), Lyrica (pregabalin), and Cymbalta (duloxetene). They too can help some, but not others. And side effects sometimes limit their use.

My point is that these drugs, even when effective, usually are not enough, on their own, to make a huge positive difference in the fibro sufferer’s life.            The same is true of other treatments. Pacing is a great idea, for everyone. But, as one patient asked me – “how do you pace when you can’t even move?”

Exercise also is beneficial; but again, it takes a long time sometimes to produce any benefit, and some patients actually feel worse, at least initially after starting to exercise. Massage can help some; but others can’t tolerate it. A hot tub can be magic for some; but others feel so wiped out afterwards they can’t function.

No one approach is the answer. And everyone is different. So at this time in the history of the universe, I believe we must address the person, and not the disease, when dealing with fibromyalgia. 


          This approach is simple in concept, and more difficult in practice.  It is:

1.                  Have the patient create a problem list.
2.                  Have the patient prioritize that list, from most troublesome to least troublesome.
3.                  Address each problem on the list, not necessarily (or usually) all at one visit
4.                  See them back and keep trying until you and the patient are satisfied.

The difference between this person-centered and the disease-centered approach is like bacon and eggs…

The chicken is involved, but the pig is committed.  

The person-centered approach requires more of the doctor.  It is more time consuming for the doctor.  It carries more risks for the doctor.  It is much less financially viable because it takes more time and effort.  Instead of rolling patients through the process like cars through a car wash, the doctors must stop, listen and actually care.

          I actually believe that many general practitioners (GPs) and family physicians already utilize this approach, much more so than specialists.  Why?  Because specialists don’t have to see you back.  But GPs do.  And so they know that the disease-centered approach doesn’t work for many/most.  In fact, I believe that many GPs are almost as frustrated with specialists as you are.  The GPs know that the drug-exercise-pace approach isn’t the whole answer.  They wish the experts would offer something more, what with all their extra training.  But they usually do not.  Why?  Because many specialists are not committed.  If they were, they’d see you more than once.

            So… because they see you again and again, committed GPs have to come up with other solutions.  Rather than senselessly tackling the whole fibro disease, they start trying various remedies to address at least the primary complaint you are bringing to them on that particular day.  This forces them to listen to you, even if only briefly, and try something new.  The problem here is that they often do not know what to try; but at least they are trying.  Anyway… let’s review the patient-centered approach.

  1. Have the patient create a problem list.

For some patients, this will be a short list; for others, a longer list.  Almost always, most of the items on this list will be symptoms, like pain, fatigue and headaches.  However, some may list loss of income as a problem, or the inability to function at work, or the inability to play with one’s kids, or marital problems…  In other words, problems other than symptoms should be on most patients’ list, because these problems almost always co-exist with symptoms.

  1. Have the patient prioritize that list, from most troublesome to least troublesome.

Although pain, fatigue and sleeplessness are the three symptoms most commonly rated as most problematic, others may begin their lists with some other symptom such as short term memory loss (unless they forget about it), or with some consequence of their symptoms, such as loss of employment or marital difficulties.  The drug A, exercise and pace approach does not address these sorts of problems very well.  The patient-centered approach, I argue, can do much better.

  1. Address each problem on the list, not necessarily (or usually) all at one visit.

Addressing a problem does not necessarily require a drug or therapy. Addressing a problem may require any one or any combination of the following:

Education...                      This is what fibromyalgia is; and this is what is isn’t!

Explanations…                “The reason your leg hurts, Mrs. Johnson, is that   there is a dog attached to it.”

Reassurance…                 “No, Mr. Jones, your arm is not falling off.  Your hand is iffy… but your arm is well attached.”

Suggestions…                  “If you always get a sharp pain in your eye every time you take a sip of coffee… take the spoon out of the cup!”

Support…                        Such as writing a letter supporting your application for a disability pension… “Mrs. Williams has objective evidence of being impaired by reason of not having moved in fourteen months…”

Medication…                   And I don’t mean just amitriptyline!!!

Therapy…                       Lots of choices here.

Surgery…                        Rarely required.

Possibly Other...              Some patients want to go the herbal route, so physicians should at least attempt to know what various potential remedies claim to offer. Remember that many drugs we now use once were herbal remedies.

  1. See them back and keep trying.

As important as any other facet of this approach is follow-up.  That is because we know we are not curing the disease here.  We are not even trying to.  We know we cannot.  What we are doing is trying to make the patient feel better.  Follow-up is necessary to see how we are doing at this, and to allow us to adjust our treatment accordingly.  It also allows us to address problems that we may not have had time for at previous visits.


I once had an elderly patient named Jeannie who always came to clinic riding a scooter – why? She had osteoarthritis in her left hip that made it way too painful for her to walk. Her doctor didn’t want to refer her to have her hip replaced, because Jeannie also had fibromyalgia and the doctor didn’t think surgery was worth it.  Jeannie’s list started with hip pain. In fact, it was numbers 1 through about 7 on her list.  I was lucky enough to get Jeannie into a hip surgeon fairly quickly, who agreed to put her on his cancellation list.
Jeannie still had fibromyalgia-related pain after her hip replacement; but she was walking and was MUCH better overall. Hip pain used to keep her up at nights, but now it didn’t; so she was more rested and more active, and even had lost weight. If I’d only seen her once, it might have taken 3 years to have her hip replaced. But because I was committed to treating her hip pain, I convinced a very good hip surgeon to become committed too.

The second patient was a young man with a wife and two young kids. I saw him several times and didn’t seem to be making much progress. His #1 problem was his lack of income, since his application for a government disability pension was bogged down and seemingly going nowhere. I saw him mid December about ten years ago. I asked him to give me his list. We spent quite some time talking about his #1 issue. He was despondent because Christmas was about one week away and he and his wife had NO money to buy their kids ANY presents for Christmas. Their wife’s part-time work and his meager unemployment insurance barely covered their rent and a little food.  I could have told him to stand pat… that things would work out, eventually… and I did. But I also gave him the $80 I happened to have in my wallet.

“I can’t take this!” he told me, trying to hand it back to me.

“It isn’t for you,” I said. “It’s for your kids.”

Now, before you go all weepy on me, please recognize that $80 meant nothing to me at the time. I had $80 in my wallet, but could easily stop at a bank machine on my way home and not miss any of it. At best, since the government health insurance plan would pay me for my time with him, I’d seen him that day for free. But the $80 meant EVERYTHING to him. 

One month later, I saw him back and he admitted that he’d been very suicidal that morning he saw me in December, so ashamed he was of letting his children down on Christmas morning. But instead of following through with his morning plans, he took the $80 I’d given him, went to a dollar store, stocked up on toys for $40 and managed to have enough left over to buy some extra groceries to make Christmas and New Year’s Day a bit special. From that day forward, every time I saw him, he brought me a plate of cookies or brownies his wife had baked for me. Six months later, his disability application was approved, retroactively, and he received a $6000 check, plus the assurance that he’d receive extra money every month thereafter. He brought his wife and both kids with him that day to tell me about this. He had a beautiful family, and all were smiling. I’ll never forget the hugs they all gave me… all because I treated this patient as a person.

That $80 was the best $80 I ever spent!

Kevin White, MD, PhD;


Saturday, 26 November 2011

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 8th and 9th century at the time of Charlemagne, or affected Florence Nightingale and Alfred Nobel (for whom the various Nobel Prizes are named) in the 19th 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

Thursday, 24 November 2011

A Wee Bit of Fibro Humour (Hey! They say laughter is the best medicine!)

CFS/FM Serenity Prayer 
(Author Unknown)

Lord, grant me the serenity to accept
The things I cannot change,
The courage to change
The things I can,
And the wisdom to hide
The bodies of doctors I shot
When they said,
"You're perfectly healthy.
It's All In Your Head."

I will assume that some of you who've read this will be more than able to relate!
Kevin White, MD, PhD

Feel Free to Comment

By the way, I welcome comments to any of my blogs. Hey! You could even comment on this one, if you'd like! Of course, please don't use offensive language or try to berate anyone on this page. That's not what my blogs are for. Thanks.

Kevin White, MD, PhD