Breaking Thru the Fibro Fog

My Humorous Rant Against the New 'Improved' Way to Diagnose Fibro

2012-02-17T17:02:00.000-08:00

Here it is finally - the video I've been promising you. I had to wash a lot of laundry to prepare for this one. I hope you enjoy it.

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

Valentine's Day Poll

2012-02-15T16:00:00.000-08:00

Well... Valentine's Day has come and gone and the flower and confection shops are just digging out from all the money they've made... and it's time for you to see the results of my first annual pre-Valentine's Day poll. On the home page of my website I asked visitors (mostly with fibro I presume) what they and their partners tended to or liked to do to celebrate International Flowers & Chocolates Day... and here are the results. Drum roll please...

So there you have it. It's mostly chocolates & flowers or NOTHING. But a few of you creative souls came up with something better. I know I can't help but wonder what that courageous 4% did. Either way, I hope you all had a relatively good day in terms of pain, fatigue and spending time with those who love and support you.

Speaking of which... a new poll has been posted on my web page that I'd love you to answer. The question is: Which disbelieving person in your life would you MOST want to believe that your fibromyalgia is real? To answer this, just go to my website homepage and scroll down a tad to find the poll box. I look forward to hearing from you.

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

Another Great Video

2012-02-14T13:58:00.000-08:00

The video I have been making for you for the last week is almost done. But, in the meantime, here is a great video I just was told about that you should make sure your loved ones and anyone else you want to have believe you see. It is extremely well done.

I should be posting my video tomorrow or Thursday.

Take care.

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

Update

2012-02-12T10:04:00.000-08:00

I am working on a new video which I hope to post on YouTube and on my blog page and home page in the next couple of days.

A New Song - written for a former fibro patient of mine.

2012-02-03T21:11:00.000-08:00

Over the years, I was moved by the life stories of many of my fibro patients, and some of these stories ended up in songs. This is one of them. I hope you enjoy it. Though the song is sad... the story had a happy ending, as a good lawyer and I ultimately were able to get this young man the disability and injury compensation he needed and deserved. The song is called Land of Opportunity. I wrote it when the Conservative Government in Ontario, under then Premier Mike Harris, had stripped away almost all benefits and protection for injured workers. This young man lived through 3 years of dire poverty because of it.

I hope you enjoy the song.

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

WOULD YOU STOP LOVING YOUR CHILD? (IF THEY GOT SICK)

2012-02-03T11:53:00.000-08:00

When I was still in practice, I saw it all the time: patients with fibromyalgia would come in to see me feeling devastated because their partner - who’d they’d been with for 5 years, 10 years, 20 years or more – was leaving them... ALL BECAUSE OF THEIR FIBRO.

Sometimes their partners actually said so – they didn’t believe in fibro and were just tired seeing their partner lying around all the time. Others were more covert, just drifting away a little more each day. They’d insist that it WASN’T the fibro; it was just that they needed to move on; or maybe it was their own inadequacies that were driving them away. Whatever it was, the emotional pain of the patient in my office was no less. Now, no longer was it just that they hurt everywhere, or were exhausted all the time, or had headaches and bellyaches. No longer was it just that they felt in such a mental fog. NOW they were alone too.

In sickness and in health... no more.

I have questions for those of you who have a partner with fibro, and are having trouble with it, and with them. The first is: what if it was cancer – would you drift away then too? If your answer is ‘Yes’, then there’s not much I can say. But if your answer is ‘No’, then what about multiple sclerosis? Still ‘No’? Then why fibro? Because research evidence is increasingly revealing fibromyalgia to be a neurological disease much like MS. And, much like MS, not all that long ago, MS was called progressive psychogenic paralysis and NOT believed in. People were supposedly just giving up on life; or so psychologically disturbed they’d let themselves waste away to nothing in a bed while not moving. But then, with the advent of advanced imaging scans – first CAT scans and later MRI – MS started to be believed.

THE SAME THING IS NOW HAPPENING WITH FIBROMYALGIA – TECHNOLOGY IS CATCHING UP! In fact, we now have scans that can SEE pain. We now know, because we have seen it, that at least a large part of the pathology that exists in fibro lies in a part of the brain called the midbrain, where there is altered blood flow and abnormal electrical activity in response to a variety of external stimuli – like pain, temperature, and even sound. And a genetic defect has been identified in families in which fibro is rampant. And a variety of other chemical abnormalities have been identified in numerous different body tissues, including the brain, spinal cord, spinal fluid, muscle and nerves. In short, FIBRO HAS BEEN PROVEN REAL.

My second question for you is – what if it was your kid who was sick - would you stop loving them too? Once again, if your answer to this second question is ‘Yes’, there’s nothing much I can say (at least, if I try to remain polite). But if your answer is ‘No’, consider this: Kids DO get fibro, even kids under ten years old. And some outgrow it, but at least 30% do not, and continue to have pain, fatigue and other symptoms well into adulthood, if not life-long. In other words, if you have a child, they could get fibro too... and if you won’t allow yourself to stop loving them, why stop loving your partner?

I know it’s difficult. I know it’s unfair. And I would be a complete hypocrite if I did not acknowledge that I haven’t been the best partner in the world all the time either; but at least my marriage has survived. So recognize that it is difficult for your partner too... and quite equally as unfair. Despite what you might think, almost no one WANTS to be sick. I say this from having seen and treated thousands of sick people... and I never met one who I believe WANTED to be that way.

And I know that extra work may be placed upon you now; and extra worry. And maybe your partner used to share in all that much more than they do now. But then I come back to my first question: what if it were cancer? Would you begrudge that too?

So now it’s nearly Valentine’s Day – the international day of love. And I don’t know how much you want to celebrate or even could celebrate. But here are a few things you CAN do:

· Believe your partner and show that you do in both your words and your actions. Maybe take a little time to read about fibromyalgia beforehand so you understand it a little better; or watch some YouTube videos about it. In fact, if you’re reading this, that’s a good start.

Sit with them: Just be there for them, even if that means letting the dishes go or using paper plates and not fretting about the bills on that day. Or, if you have the resources, paying for a babysitter to look after the kidsfor a few hours so you and your partner can have some time together and undisturbed.

· Talk with them: Remember those days when you first started dating and sat opposite each other at a table and gazed into each other’s eyes, and all you wanted to do was get to know them and get them to know you a little bit? Well... do that again. Learn about each other... again.

Turn back the clock, at least for one day: Again, remember back to when you first started to fall in love, and all you wanted to do is hold and protect them, and care for them. Feel like that again, even if for just this one day. And maybe throw in some flowers and/or chocolate and/or breakfast in bed, and/or time together in a hot tub.

But, most of all, take this day to recognize that dealing with fibromyalgia isn’t easy... for anyone.

Then again, neither is life all the time... is it?

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

My Biggest Hit Song

2012-01-31T09:56:00.000-08:00

I include this song here because I literally wrote it, in the car driving home, after a full day's research studying fibromyalgia in the Amish community just outside Aylmer Ontario. No guitar. No piano. I was driving, but the song just popped into my head. By the time I got home, it was done. Only THEN did I pull out my guitar to figure out what chords I needed. This song has been my biggest hit, recorded by other artists and even appearing on the radio from time to time. I hope you enjoy it.

To buy the CD that has this song on it, as well as 12 other original songs, just click here

The CD is called GHOSTS OF THE CPR

The paper reporting the results of my study of fibromyalgia in the Amish can be found at

http://www.jrheum.org/content/30/8/1835.abstract

Two New Videos

2012-01-27T06:26:00.000-08:00

Here are two new videos for you to look at and, I hope, enjoy. The first is a YouTube video version of my previous blog post - Herbals & Gerbils: Fibromyalgia, Doctors and Herbal Remedies

And the second video - called When Even Hugs Hurt - is a personal plea for those who either have a loved one with fibro or somehow take care of them (as a health-care practitioner, lawyer or otherwise) to take time to learn the facts about fibro - especially that it is a REAL PHYSICAL DISEASE that has been proven such scientifically.

Again, I hope you enjoy these. And, if you do, please let others know about them. The more people who learn the truth about fibro, the better it will be for EVERYONE who has it, AND for those who care for them.

Kevin White, MD, PhD

See my webpage

Heriot Bay - Song by Kevin White

2012-01-23T18:44:00.000-08:00

To add a little music to this page, this is a song I wrote about the decreasing numbers of killer whales (orcas) off the coast of British Columbia. This song is on my CD, which is available at
http://wortleyroadbooks.com/Store/tabid/1523/CategoryID/27/List/1/catpagesize/0/Level/1/ProductID/301/Language/en-US/Default.aspx

I hope you enjoy the song.

Does Thinking about Exercise Burn Calories? Tips on How to Build Your Exercise Routine

2012-01-23T08:34:00.000-08:00

Did you know that just THINKING about exercising actually burns calories? It really does! The problem is... that it doesn’t burn very many of them. For example, it won’t even come CLOSE to burning off that extra large slice of chocolate cream pie you want... unless, of course, you only THINK about having the pie.

“What about if I eat the pie and think about spinach?” you ask.

Seriously, man! If you’re thinking about spinach while eating chocolate cream pie, you are in deep psychological doo-doo!

Psychotic episodes aside... if you have fibro and want to start some sort of exercise routine, whether it be to increase your strength or endurance or cardiovascular fitness; or to improve your sleep; or to lose weight; or just to piss your couch-potato partner off - you have to do more than just think about it.

But you DO need to think about it. Or, more specifically, you need to think about issues like HOW you’re going to do it, WHERE and WHEN, as well as WHAT you are going to do, and WHICH Speedo or bikini you’re going to wear.

As a world expert in fibromyalgia who just last week somehow managed to put a sweater on both backwards AND inside out and not notice it for 3 full hours (that damn laundry tag kept tickling my chin), let me give you some tips:

TIP #1: DON’T CHOOSE DODGEBALL!

... or kick-boxing; or bull riding; or bull fighting; or rugby. In other words, don’t try any exercise that involves you being hit, punched, kicked, gored or otherwise pulverized. Don’t even shadow box: accept that, at least starting out, your shadow will probably kick the living snot out of you.

Not only that. But because of the impact of feet against hard earth, you probably shouldn’t even run... or jog... unless you can somehow swing it to run in some low-gravity environment like the moon... or Charlie Sheen’s bedroom.

No! Instead, select a nice, non-contact sport like swimming or low-impact aerobics or professional ice hockey.

And DON’T bungee jump! Why not? Because it FREAKS ME OUT!!!

TIP #2: DON’T STUFF CHOPSTICKS UP YOUR NOSE!!!

Don’t you remember that Monte Python skit, where the guy kept complaining about how much it hurt when he stuffed chopsticks up his nose? Well DON’T DO IT!!!

And don’t do any exercise you hate doing either. Take me for example. For whatever reason, I’ve always hated working my upper body. As a young man, I was a very serious competitive runner – track, cross-country, running from police... hey! I did it all. But when it came to me and upper body exercises... well, I was the ONLY dumbbell I EVER got close to. Why? Because I HATED them!

“Why?” you ask. WHO THE #@*& CARES? I just did. I had the upper body physique of a spaghetti noodle, but no matter how many times people looked at me and rolled their eyes, or otherwise subtly insinuated that I needed to bulk up by calling me a pathetic dweeb, I still totally forgot working out anything that didn’t have a foot attached to it.

So choose some exercise you enjoy... or think you’ll enjoy... or at least won’t absolutely abhor.

TIP #3: DON’T RUN ON THE MOON!

In case ANY of you ARE considering it, DON’T start calling around trying to get permission to run on the moon (or Charlie Sheen’s bedroom), despite the low gravity. Why? (What’s with all the WHY’s?)

BECAUSE IT WON’T BE CONVENIENT FOR YOU! Make sure that whatever exercise you choose to do will be convenient enough that it’s no real bother for you to get where you need to go and do what you need to do. If you want to ice skate but live 23 miles outside Las Vegas... uh uh! It ain’t happenin’! Or want to walk around the university track when the university is 10 miles the other side of town and you need photo ID and a small envelope of weed to give the guy at the security desk to gain admission... again... it ain’t happenin’!

What about just walking outdoors? Great! But if you live at the top of a 400-foot hill or anywhere where it snows 13 months a year, like Canada (but seriously folks, it only snows 12 months a year up here), or where the temperature gets upwards of 200 degrees, like Charlie Sheen’s bedroom... you’d better come up with something else. Maybe walk when it’s nice outside, but use a treadmill or arrange a drive to the nearest indoor mall when the weather turns nasty.

Whatever you choose - the more likeable and convenient the exercise is for you, the more likely you actually will start it and keep up with it... which is the WHOLE BLOODY POINT!

TIP #4: MAKE SURE YOU WEAR YOUR BEST SPEEDO!

Or bikini! Or not... but whatever you wear, make sure it’s both comfortable for you and good for whatever exercise you are doing.

Never wear stuff that’s too tight, even if you’ve got the best booty in town, because it restricts blood flow to those all important MUSCLES you’re trying to exercise. Show off that fabulous booty of yours LATER!

If you are walking, don’t chintz out on shoes. In fact, don’t chintz out on shoes even if you’re not walking. Take care of your feet... you just MIGHT need them some day.

And if you want to bicycle, wear a bloody helmet! (Though, I ask you, WHY do sky-divers wear helmets? Think about that for a second. Goggles, okay. But a helmet???)

TIP #5: DON’T BORROW YOUR KID’S TRICYCLE!

Or anything that Grandpa Jake used to use when he was a teenager still trying to impress Grandma’s twin sister.

No. Make sure that whatever equipment you use is in good working order and appropriate for your size, weight and complexion. If, for example, you want to bicycle, have someone who knows modern bicycles (NOT Grandpa Jake) take a look at it to make sure that everything is oiled and moving right and not about to fall off when you’re barrelling down a 40-degree hill with no brakes. And make sure that the seat is high enough so your knees don’t knock your teeth loose every time you peddle.

Ditto with your treadmill or whatever other new-fangled contraption (as Grandpa Jake calls it) you decide to use.

TIP #6: WIMP OUT!

I mean it. Totally wimp out! I want you to start with such a small amount of exercise you need to be Sherlock Holmes to find it. We’re talking microscopic! We’re talking tweezers! We’re talking flea-circus!

Well, no... not really. But DO start with a ridiculously small amount, and continue this for about three weeks, at least 3 -5 times per week, BEFORE increasing it.

“WHY so little?”you ask the man in the backwards, inside-out sweater. Because I want you develop the HABIT of exercising before it starts hurting.

“WHY three weeks?” Because, research shows, that’s how long it is for a new habit to become engrained... and because I said so. And I’m the man in the backwards, inside-out sweater.

I literally used to tell patients that, for the first three weeks, I just wanted them to change into their exercise clothes, drive to the mall or gym or whatever, look at the place, and then drive home. Again, what’s important at that stage is NOT the exercise, per se, but the HABIT of exercising. Make sure the habit is strong FIRST, and only THEN start strengthening yourself.

TIP #7: WIMP OUT AGAIN!!!

What I mean is, once you do start to increase the amount you are exercising each time, make sure you increase SLOOOOOOOOOWLY. I’m talking snail-walking slow! Grass-growing slow! Doctors’ waiting-room slow! Politicians-actually-fulfilling-a-campaign-promise slow! (Well... maybe not THAT slow.)

My point is for you to increase the exercise slowly enough that you don’t start hurting so much you have to stop exercising and start all over again. A little discomfort is fine, but it should be as little as possible. Agony is NOT therapeutic. You’re not in a race here. There is no Fibro Olympics! (Could you imagine... we could start out with the bed to bathroom sprint!)

AN EXAMPLE

I once had an elderly patient who wanted to start walking through her neighbourhood; at the time, she didn’t walk outside the home AT ALL. Since it was late spring and there were several months of nice weather ahead (we hoped, but this is Canada, so you just never know), I told her just to start by picking up the mail from her mailbox, which was at the end of her walkway, perhaps 20 feet from her front door. She started by asking the mailman (a kindly young man who knew she was hurting) to stop bringing her mail right to her door. She then started picking up her own mail, and did nothing more walking than this, for three weeks, wearing a nice pair of running shoes she’d bought years ago and hardly ever worn.

After those first three weeks, she started walking to the neighbour’s mailbox (though she SWEARS that she had NOTHING to do with the package of Anthrax they received). Then a week later, to the next neighbours’ mailbox. Once a week, after the first three weeks were up, she walked one house further. Eventually, as she started feeling stronger, she started adding two houses at a time; and then three houses at a time.

Within 6 months, she was walking around the block... and feeling better. Not perfect... but better. And walking was something she now looked forward to. And she now could go out with her family when they went shopping at the mall or to rob the local bank. She’d stop and rest often, while they mulled around various stores or planned their getaway. But she was now able to participate. And this all started with telling her mailman just to stop bringing the mail right to her door.

So again, what did she do to achieve this success?

(1) She didn’t choose dodge ball or any other exercise that was going to maim or dismember her. She chose walking, a safe activity in at least 14% of cities worldwide. (2) She didn’t stuff chopsticks up her nose or force herself to do any exercise she hated; she chose a practical exercise that she thought she would enjoy, and that (3) was NOT on the moon, but right outside her front door. (4) She elected NOT to wear a Speedo or string bikini, but DID make sure to wear good running shoes. (5) She needed no tricycle or other equipment that needed fine tuning, but DID start her exercise in late spring when the weather was starting to be nice and the pathway to her mailbox was no longer icy or snow-covered or covered in hibernating bears. (6) She wimped out, like I’d instructed her to, and started with a 40-foot round-trip walk, once a day; and (7) wimped out again by not increasing her walk for the first three weeks, until picking up her mail was a well-ingrained habit. Then and only then did she start to increase her walks in length, but only slowly and in small increments. And then, as the 8^th and last item in my list of tips, she allowed herself to...

TIP #8: PIG OUT!

I told her to reward herself every time she met a goal she’d set for herself. Now, if she’d been really overweight and trying to lose weight, I wouldn’t have suggested that she pig out with food, but maybe by buying some small thing she’d wanted for awhile or by inviting that nice young mailman in so she could see HIS Speedo.

As it turns out, what she REALLY wanted was a nice big slice of chocolate cream pie! And she didn’t even have to think about that one.

Kevin White, MD, PhD

See my webpage

Herbals & Gerbils - Fibromyalgia, Doctors & Herbal Remedies

2012-01-19T09:57:00.000-08:00

I once had a doctor quite verbal

About how he HATED all herbals.

I told him “I see...

But this stuff is for me.

I don’t CARE it’s not tested on gerbils.”

Face it... doctors can be REALLY pig-headed. Hey! I can say that, because I am one... and I’m really pig-headed about that.

But aren’t they though? You walk into their office and sit down and wait for a day and a half in your underwear to ask them what they think about this new preparation of green mould tea you’ve been drinking for 6 weeks, pleased as punch that it seems to be working... you’re feeling better, and stronger and more good looking... and even taller... and then once you tell him (or her) about your new-found remedy, he (or she) goes absolutely ballistic on you.

“You’re drinking WHAT????”

And you feel like you’ve just admitted to micro-waving your children.

And then the good doctor goes on to talk about doubled-blinded, randomized placebo-controlled trials, and statistical-significance, and type 1 and type 2 error, and placebo effects, and radishes, and sex in cartoons on TV... and you realize that Doc is REALLY losing it.

Here’s the scoop. Most alternative therapies are unproven, at least relative to the standards that are required for most drugs... but that does NOT mean they don’t work.

Let’s start by talking about what a randomized placebo-controlled trial (sometimes called a randomized clinical trial) is. It’s typically just a study in which people with a particular health condition are randomly selected either to get some real drug (maybe a pill or a liquid, or maybe an injection), or to get a fake pill or liquid or injection that looks and tastes and smells and plays guitar EXACTLY the same... so no one but some little guy wearing black-rimmed glasses and a toupee working in secret in a small pharmacy in Chicago knows who’s getting what. And no one knows until the study is over, so then researchers can look and see who got better and who didn’t without people’s knowledge of what they were or weren’t taking screwing everything up.

Okay. Perfect. We now KNOW if something works or not. But first of all... do we? Because drugs are invariably tested several times, and invariably they DON’T work in Pittsburgh when they DID work in Los Angeles and Toronto and Paris and your Cousin Harvey’s basement. So which study do you believe? Maybe the guys in Pittsburgh are the only ones who know what the heck they’re doing! Or maybe the drug works GREAT for the full duration of the 12-week study, and then everyone drops DEAD in week 13.

“Sorry... the study ended last week.”

My point is that even randomized placebo-controlled trials (sometimes called RCTs) aren’t perfect.

Now back to herbals and other controversial alternative therapies like physiotherapy and occupational therapy and counselling. Can we truly give placebo physiotherapy? “Hey! I may or may not give you physio, and you won’t know it and I won’t know it until the end of 12 weeks!” Would that WORK?

How about surgery? “I may or may not remove your brain tumour, and I'll be operating with my eyes closed.” “Sure Doc, sign me up.”

The fact is that many very well-accepted treatments will NEVER pass the scrutiny of the randomized placebo-controlled clinical trial (sometimes called Frieda). Does that mean THEY don’t work?

“Let’s close the surgery department down because we’ve got no placebo.”

Of COURSE not! And the same is true of herbals and magnets and massage and chiropractic and therapeutic touch and bananas and other treatments that may make your doctor rage and rant. Most of these treatments will never meet the same level of scientific proof as that little pink pill... but that doesn’t mean they don’t work. Many, many drugs we use today once WERE herbal remedies... that have now been ‘PERFECTED’ by purifying them, perhaps modifying them, and then wrapping them in a tasty candy coating, strange name and big price.

Besides, many of these alternative therapies HAVE been tested, to as high a degree as modern scientific methods will allow... and HAVE been found to be better than mock treatments. Herbals... sure; some of them have been tested and have been shown to be more effective than placebo. We can’t be entirely sure people on ‘placebo’ didn’t get the same ingredients as the magic herb in their diet or somewhere else... but hey! That’s inevitable to some degree. Magnets... YES. Several studies have demonstrated the benefits of magnetic fields on pain. Will little magnets tucked into your Speedo work? I don’t know. But at least the principle of using magnetic fields to treat pain has been tested. And therapeutic touch... which isn’t touching at all and sounds like complete hooey... actually was proven to speed up wound healing. Go figure!

And what about this damned placebo effect anyway? Some doctors say: “it’s all just a placebo effect.” But if you feel better, WHO THE HECK CARES? So long as I can afford it and it isn’t hurting me, I don’t care if it’s just mind over matter. If I feel better in my mind... that STILL matters!

I’ve always told people... just be a smart consumer. More specifically:

#1: If something seems too good to be true... it probably is!
If some remedy touts being able to make your pain and fatigue go away forever, and cure you of cancer, diabetes, heart disease, rabies and foot fungus... AND make you 3 inches taller, ten times sexier, and 47.2361% smarter... that’s PROBABLY too good to be true.

#2. Don't sell the farm
In general, don’t buy any treatment you have to remortgage your house for, unless the therapist is really, REALLY hot! Seriously, though, if you want to try something out, okay. But buy a small amount to see how it works first. Don't buy a year's supply for 30% before you've had a trial of it. What happens, for example, if you're allergic. In fact, with creams, I always recommend you apply only a small amount over a very small area of your skin (that you can see, like your arm) to make sure you're not allergic before liberally gooping it on.

#3. Talk to others who’ve tried it whom you trust.
Find out what their experiences have been. And now that we have Twitter and FaceBook and Linked In and whatever else, you have even more sources to go to. But exercise caution believing people you've never met other than on-line. There's something about you knowing how to get to someone's house that will make them that much more honest.

#4. And ask your pharmacist.
Despite our big heads, doctors don't actually know as much about drugs and herbals remedies as pharmacists. We understand the diseases to be treated MUCH better (we hope). But pharmacists have YEARS of training in drugs, whereas how drugs work and what side effects they have are only a part of what doctors learn. Ditto of therapists and therapy, nutritionists and diet, etc.

And otherwise, just use common sense. And maybe, just maybe, once your doctor sees how well you're doing and stops chattering on about caramel popcorn, how educational the Gong Show used to be, and the horrific plight of monkeys on Mars, he (or she) will come around too.

Kevin White, MD, PhD

Buy my award-winning book

SO WHAT ABOUT VALENTINE’S DAY?

2012-01-17T11:20:00.000-08:00

Well here we are. We’ve just survived the holidays of December, pitched the tree or put away the menorah just in time to avoid setting the house on fire... and we’re right back looking at another holiday.

Sure... Valentine’s Day isn’t a day off. You don’t cook turkey. No one is breaking into your home via the chimney. There’s no Valentine’s Day parade, discounting long lines to wedding chapels in Nevada and that cheesy wax museum in Niagara Falls. And if family members start arriving at your door on February 14^th asking for entrance, it is legal to shoot them in at least 17 countries worldwide. But it’s a big day nonetheless, says every card, flower and confection shop around the world... and so you’ve GOT to get ready.

But what do you do and how do you prepare if you have fibromyalgia, and your idea of a romantic evening has been reduced from wearing a string bikini or Speedo and making passionate love on a Spanish beach as the sun goes down to wearing Ben Gay and leaving a 6-word note for your partner, written in red crayon, that says “I’ve gone to bed early”?

And what do you WISH your partner would do for YOU on V-Day?

Given that I’m a typical male, and therefore have as much notion of true romance as a turtle in heat, I am inquiring of you, my readers:

Again, what do YOU do, what your partners do for you, and what do you WISH your partners and other loved ones would do for you to celebrate International Flowers and Chocolate Day.

Just post a comment to this blog. It’s fun and easy. You’ll be giving helpful info to other readers. You could win fabulous prizes (but probably not). AND YOU JUST NEVER KNOW – it might just so happen that a former friend of your partner’s Uncle Bert reads it, intends to notify Uncle Bert to let him know how to save HIS marriage, but types in the wrong email address and contacts your partner by mistake, who then reads this blog, puts two and two together and somehow comes up with the strange notion to actually do something nice on Valentine’s Day, and you end up having your Valentine’s Day wishes come true after all.

Hey! It COULD happen!

So help me out and POST YOUR COMMENTS PLEASE!!!!

Thanks.

Kevin White, MD, PhD

MERCY REPORT #2 – DR. WHITE RANTS ABOUT THE 'NEW CRITERIA' FOR FIBRO

2012-01-13T10:43:00.000-08:00

Do you know what Rheumatology is? It’s pronounced room-a-tol-oh-jee. I used to think it was the study of claustrophobia... you know, people who can’t get enough ‘room’. But no – rheumatology is the study of the rheumatic diseases.

“Isn’t rheumatics how air brakes work?” you ask.

No, Grasshopper. THAT is pneumatics. Rheumatic diseases refer to arthritis and rheumatism.

“Oh great!” you sigh. “How many ‘rheums’ does this bozo have?”

It’s simple, my young Padawan. Arthritis refers to pain in joints; and rheumatism is pain in muscles and other soft tissues like tendons. Anyway... it turns out that Rheumatologists (that’s just rheumatology misspelled) and Neurologists (nerve doctors) are slugging it out over who gets to treat fibro... and neither group wants it. The Rheumatologists point out that, though fibromyalgia USED to be considered a form of muscular rheumatism, recent research now indicates that it is, in fact, a disease of the brain and nerves. On the other hand, Neurologists point out that it was rheumatologists who first came up with this wacky condition in the first place. “So you take it. No, you take it. No, you take it. No you take it.” And so on.

Meanwhile, anaesthesiologists who run pain clinics point out that most fibro patients have pain just about everywhere... “So where the HECK do I put the fricken needle?”

And veterinarians... well, they haven’t weighed in on the issue yet.

But now there’s great news for all these specialists! Now, NONE of them have to see you.

Why?

Because new, IMPROVED diagnostic criteria have just been published that do away with the classic tender point examination, which has been the mainstay of diagnosis since 1990. Now, instead of any doctor taking the time to actually examine you, all that’s needed is a questionnaire that asks you if you hurt and then asks you where.

It’s even fun. The questionnaire gives you 19 different choices where you might hurt... your left upper leg, your right upper leg, your left lower leg, your right lower leg... and so on. And once you’ve finished you move on to rate the severity of your fatigue, waking unrefreshed and cognitive problems. Then, finally you’re asked if you have headaches, lower belly pain or cramps, or depression. It’s kind of like ordering at a Chinese restaurant. “I’ll take numbers 5, 8, 14 and 17, some won ton soup, and, oh, those cute little almond cookies.”

Once you’ve ordered, you then get to find out if you have fibro or not, by adding this to that and this to that and multiplying everything by your old Aunt Edna’s bra size and Voila! You get a score that either says ‘Yes, you have fibro” or “No, you have rabies.”

It’s so simple. You can be diagnosed in the waiting room, just by filling out the questionnaire yourself, BEFORE the doctor sees you. And if your hands are so bad you can’t hold onto a pen... no worries! You usually have to wait so long anyway, by the time you’re seen you can probably form life-time friendships with other people waiting, or trace each other's geneology back 17 generations to find out that you're distantly related... and then maybe they’ll fill the questionnaire out for you. And all without the doctor ever touching you.

What’s next - an even newer version for on-line use? Hey, they could make that one even simpler... just one question: “Do you feel like shit?”

“Congratulations! You have fibro!”

And now you don’t even have to go into the doctor’s office to fill out the questionnaire in the waiting room.

Magnificent!!!

But I hate these new criteria, and here’s why...

First, if all you need is a questionnaire, specialists will no longer have to see you. And if specialists no longer have to see you, they will MISS other problems that often co-exist with fibromyalgia. Just where oh where on that questionnaire do you indicate that your fricken nose has fallen off? The fact is that people with fibromyalgia are at increased risk of having a host of other rheumatic conditions, like osteoarthritis, rheumatoid arthritis and lupus. And if you don’t have those things, you might have treatable localized conditions like shoulder or hip bursitis or carpal tunnel syndrome or tendonitis of the heel that could be fixed with a simple shoe insert. But if no one examines you, NO ONE WILL KNOW.

And second... who’ll believe you? If you have trouble making your family doctor believe you NOW, even after a specialist has confirmed that you have fibro, how will it be for you if you go in saying you diagnosed yourself on an on-line shopping channel, or while cruising porn sites?

Now, to be fair, many Rheumatologists are still happy to see you, though I've seen more and more start saying No; and a small percentage of Neurologists, who generally call themselves functional Neurologists, see fibro patients too. And the new questionnaire was supposedly created only for research purposes; mind you, the same can be said of the old criteria, and they became the gold standard for diagnosis. And the new questionnaire is not INTENDED for self-administration, though I'm sure it's only a matter of time before it is.

But I'm still concerned. WHAT the heck was WRONG with the old criteria anyway? And how do these criteria improve anything? My fear is that many specialists will see these new criteria, that require no physical examination to confirm fibro, as another reason they don't need to see you; and more doctors in general will see them as yet another reason to justify calling fibro a non-physical disease, despite a mountain of evidence now proving otherwise.

And whatever criteria you use, THAT'S pronounced STU-PID!!!

Kevin White, MD, PhD

JUST RELAX WHILE I HURT YOU! (ARE WE DOCTORS STUPID, OR WHAT?)

2012-01-10T15:28:00.000-08:00

Don’t you find it funny how doctors, especially specialists, ask you to “Relax” just before or while doing something that you and they both know is going to cause you extreme pain? They push on your leg. You yelp and jump. They twist your arm 270 degrees and wrap it around your head three times. You scream!

“Now Mrs. Thomas. I need you to relax,” says the oh-so-kind-and-compassionate doctor.

“And I need you to shove this ball point pen from my purse five inches up your nose,” you think sweetly.

The truth is… most of us doctors are severely socially impaired, or just plain stupid. We’ve forgotten what it’s like to interact with normal human beings under normal circumstances. We stick a giant-sized popsicle stick down your throat and tell you to say “Ahhhhhh.” Like… what the heck ELSE could you say? We have immobilized your tongue with a stick that’s covered in splinters.

“Say Philadelphia.”

“Ah ah ah ah ah.”

We ask you to breath in - “Then out. Then in. Then out. Then in. Now Hold it.” - while we listen intently through our stethoscopes for 14 minutes and you’re turning blue. We ask you to touch your nose. Then our finger. Then your nose. Then our finger. And back and forth again and again and again and again. Like… what the HECK is that all about?

We ask you if you'd mind having a couple of medical students come in and examine you... and then, before you even have a chance to answer, the room fills up with 26 juveniles in white coats and sneakers, all drooling.

And then we ask you to relax when we’re about to perform a rectal or pelvic exam.

Yeah… sure.

Diagnosing fibromyalgia is not as hard as you have been led to believe (i.e., there’s no reason you should have to wait 6 years and see 15 specialists before someone figures it out). There are relatively few things that make someone ache all over. A flu will do this… but it goes away usually in a few days to a few weeks. Listening to a political debate may do this, but this usually ceases when you finally give up and switch channels to watch The Cake Boss.

No… if you sincerely ache all over, and have done so for months or years, then fibromyalgia is quite likely. Your doctor certainly should suspect it. Not to say that you couldn’t have something else too. Fibro CAN co-exist with other conditions, and these conditions MUST be recognized to maximize your likelihood of doing well.

But fibromyalgia is not a diagnosis of exclusion. It is not what you have because the doctor has examined you and gotten several tests and X-rays and nothing else shows… “So it must be fibromyalgia.” Fibromyalgia is diagnosed when the doctor asks you what bothers you, finds out you have generalized musculoskeletal pain, debilitating fatigue and sleeplessness, and then examines you.

The specific examination finding he or she should be looking for is diffuse body tenderness. Relatively light touch, when he or she pushes down on your skin with a thumb, will cause you pain… often quite severe pain. There are 18 specific body points the doctor or other health care professional will be examining. These are called the fibromyalgia tender points. Some experts have recently called for these points to be abandoned, but I think this is a BAD idea (as I’ll comment further in a later blog).

Some doctors like to talk about ‘control points’. Their contention is that, if you are tender at these so-called control points, in addition to the fibromyalgia tender points, this means you are just tender everywhere and, in their minds, faking it. But this is, to use the scientific term, baloney. Most patients with fibromyalgia are diffusely tender, not just at the specific 18 points. Tenderness at control points just means that you are tender at these points too. This should be obvious to anyone who understands the underlying cause of fibromyalgia (which is now known to be dysfunction of the central pain processing centre in the midbrain), which excludes MOST doctors your insurance company will send you to.

So… fibro is diagnosed by the history of chronic widespread pain and tenderness, especially tenderness at a majority of these 18 specific points. NOT by exclusion. And almost all people with FM have debilitating fatigue and non-refreshing sleep… in addition to a constellation of other symptoms which many but not all people with fibro have - like headaches and migraine headaches, crampy abdominal pain, pain when you pee, numbness and tingling and other funny sensations, sensitivity to hot and cold and light and sound and chemicals and smells and silly long lists; and problems with concentration and... and... and... and... oh yeah - MEMORY!

To diagnose fibro, then, your doctor must…

1. Listen to your story… what symptoms you have.

2. Examine you, especially examining for diffuse body tenderness, especially at these 18 fibromyalgia tender points.

3. Make sure you don’t have something else as well, which might accompany fibro like arthritis, tendonitis or bursitis.

How does your doctor make sure you don’t have something else? He or she must…

1. Listen to your story… what symptoms you have.

2. Examine you, especially examining your muscles, bones, joints, tendons, ligaments and bursae, as well as your neurological system, your skin and other organ systems.

3. Consider further testing, like blood or urine tests, X-rays or other imaging techniques, if he or she feels that some other conditions still are suspect, based upon your symptoms and physical findings.

There's a pattern here... I just KNOW it!

Listening to you and examining you are the two most crucial steps in diagnosing the cause(s) of your symptoms. Lab tests and X-rays are secondary and, essentially, meaningless unless the first two essential steps have been taken.

So… “Relax while I hurt you.”

"Yeah... sure, Doc!" Now WHERE did I put that fricken' pen?

Kevin White, MD, PhD

There Once Was a Woman with Fibro

2012-01-05T14:07:00.000-08:00

There once was a woman with fibro

Whose doctor just laughed when she said so.

“The good news,” he said

“Is it’s all in your head.”

Now all they can find is his torso!

Admit it! If you’ve had fibromyalgia for awhile, or maybe just received the news, you’ve probably run across someone you’ve wanted to strangle because they just… don’t… get it! Maybe they think you’re faking. Maybe they think you’re nuts. Maybe they, like Dr. Norton Hadler, just think you’re feeling “out of sorts”, and all you need to do is snap out of it.

Comments or insinuations like this can lead you to looking frantically for legal loopholes that justify homicide… or at least dismemberment. But let me take a minute to give five reasons WHY so many people, including doctors, have trouble swallowing the concept of fibro, and what you can say to them the next time they doubt you.

First of all, you likely look normal. If you had a 10-pound tumour growing out of your nose or your hair was spontaneously changing color every 17 seconds, they would be more likely to believe you.

Second, your labs likely all look normal. Haemoglobin – check; serum sodium level – check; blood caffeine level – check.

Third, your X-rays and other imaging tests (if any were ordered) also likely look normal, or near enough to normal that they don’t explain your pain. (Believe it or not, I once ordered a CAT scan of the brain for a patient, and the radiologist’s report came back saying “Nothing seen!” That was the entire report: Nothing seen. So was it the patient who was brainless, or the radiologist?)

Fourth, every so often we read in the paper about some person who wins a 46 billion dollar settlement because someone’s dog peed on their toe, and many people think that chronic pain has just become a game… Fake it ‘til you make it!

And fifth, doctors (and others) invariably cry out – “THERE WAS NO SUCH THING AS FIBRO UNTIL A FEW YEARS AGO!!!”

Maddening, isn’t it! Now put the knife down and I’ll give you a few good comebacks.

To the comments that you and all your tests LOOK normal, merely ask the critic (doctor or otherwise) if they have ever had a headache. If they say “Of course, you nut job!” just ask them to “Prove it, you lying heap of parrot snot!” Then ask them if they believe in autism? Or in polymyalgia rheumatic (pronounced pah-ley-my-al-jia roo-mat-ika)? Doctors will ask; “Where the hell did you hear of polymyalgia rheumatica?” Everyone else will ask “polymywhatsika?” Either way, you’ll have them stumped, because both autism and polymyalgia rheumatica (pronounced P M R) are well-accepted conditions for which the source of pathology has almost everyone stumped (except, apparently, for one left-handed guy with three teeth living in a trailer in Big Foot, Alberta who’s got EVERYTHING figured out).

To counter the tales of $46,000,000,000 settlements, just ask them: “Do you know WHY that was in the news?” Wait for a second… “Because it’s NEWS, you malodorous imbecile! It DOESN’T happen very often. If you want to fake your way onto easy street, try walking a mile in MY shoes, ESPECIALLY because they happen to be 3 sizes SMALLER than YOUR shoes, so you’ll actually get some sense of what my feet feel like ALL THE FRICKEN' TIME!”

Finally, to counter the criticism that fibromyalgia didn’t even exist until a secret pamphlet went out in 1994 telling people how to act and what to say to piss their doctors off, just smile politely and say: “You moronic pervert! Haven’t you ever heard of Florence Nightingale?” (She was the mother of modern nursing, who just happened to have kept a diary documenting her chronic widespread pain and fatigue over the last 40 years of her life, back in the 1800s).

Then say: “And what about Sir Alfred Nobel, who had more brains in his left big toe than you’ve had in your entire family over six generations?” (The father of the Nobel Prizes, he wrote letters documenting his widespread pain and fatigue, also in the 1800s.)

“And what about the Holy Roman Emperor Charlemagne? You snivelling piece of…”

You get the picture! Calm, but poignant comebacks to put everyone back on the same page.

So now… put all your knives back in the drawer and hold your head up high… that is, if you have the strength to sit up!

Kevin P. White, MD, PhD

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

2011-12-23T15:07:00.000-08:00

‘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

BACON & EGGS, AND THE PERSON-CENTRED APPROACH TO TREATING FIBROMYALGIA

2011-12-16T09:52:00.000-08:00

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…

I‘VE NEVER TREATED FIBROMYALGIA!

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.

BECAUSE I TREATED PEOPLE!

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.

THE PERSON-CENTERED APPROACH TO 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.

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.

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.

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.

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.

A COUPLE OF EXAMPLES

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; www.thefibrofog.com

How I Came to Be a Fibromyalgia Advocate

2011-11-26T15:36:00.000-08:00

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

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

2011-11-24T08:58:00.000-08:00

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

2011-11-24T08:45:00.000-08:00

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

My Conversation with Cindy

2011-11-24T08:40:00.000-08:00

I received a phone call today from a woman named Cindy. She'd heard about me from a cousin, who I diagnosed with FM about 20 years ago. Cindy then found me on the internet, and this led her to my website and then to call me. I spoke with her for about 15 minutes. During this time, she told me about a couple of blogs she'd just written; in one of them she mentions me, my book and my famous editorial - FIBROMYALGIA: THE ANSWER IS BLOWIN' IN THE WIND. She wanted my email address to send me the links to her blogs. When I read them, I found them poignant... so here are those links to Cindy's blogs: http://justnorthofwiarton.blogspot.com/2011/11/by-definition-silent-pain-behind-smiles.html?spref=fb
http://justnorthofwiarton.blogspot.com/2011/11/more-learning-bruce-county-mini.html?spref=fb. I encourage you to read them. Here is a woman battling against fibromyalgia who has nonetheless found purpose and joy in her life. She is NOT, in any way, looking for sympathy or for handouts. She is using whatever strength she has to help and educate and support others. God bless her and all those like her!

Kevin White, MD, PhD

Fibromyalgia in the Amish?

2011-11-19T08:45:00.000-08:00

Critics of fibromyalgia have called fibro a lot of nasty things, including 'a common non-entity', 'an illusionary entity', 'the syndrome of feeling out of sorts', and 'a useful illness'. It also has been called 'a fabrication of the North American court system' and 'big business for plaintiff lawyers', strongly implying that it only exists in rich industrialized countries that have generous disability and injury compensation plans. But did you know that fibro is twice as common in Bangladesh and Pakistan than almost anywhere in the West?

Not all that long ago, Dr. John Thompson and I published the results of a study we did looking at whether fibromyalgia existed at all in the Amish of southwestern Ontario. If, as the critics claim, fibro is a compensation-driven illness, then it shouldn't exist at all in the Amish, who refuse all such programs.

Guess what? Not only did we find fibro, but it was MORE COMMON in the Amish than in their non-Amish neighbours. Why? As I discuss in my book BREAKING THRU THE FIBRO FOG: SCIENTIFIC PROOF FIBROMYALGIA IS REAL - almost certainly the reason is genetics, since another research group already has identified a genetic defect to explain pain in families in which fibro is especially common.

So any critic who says that fibro is just a manifestation of our rich Western insurance systems doesn't have a scientific or legal leg to stand on.

Kevin White, MD, PhD