Thursday, 7 June 2012

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

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


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

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

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

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

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

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

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

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

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

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

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

Beware that thumb!!!

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

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

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

Kevin White, MD, PhD


  1. Thanks Dr. White you hit it on the Head! OUCH!

  2. Congrats on another well written, informative article my friend. In healing, harmony and hope, Celeste, RN, author, advocate AND patient.

  3. Priceless, Dr. Kevin! Thank you for believing . . .