Fibromyalgia Explained: Part 1

Hey, listen. Since May has been declared Fibromyalgia Awareness Month, even if you don’t have it I’d appreciate your plowing through the next couple of health tips and learning something about this miserable condition, which affects more than 15 million people, 95% of them women.

Many (though certainly not enough) of the sufferers who have lived with widespread muscle pain for decades are already plenty “aware” of their fibro. Then there are others, like the 71-year-old woman I saw last week whose fibro began when she was about 25. After several doctors told her “it was all in her head,” she accepted this hogwash as truth.

A half century of constant daily pain is so unimaginable that simply for her we should all learn more about fibro and pass along the information. You can get an idea of the frustration fibro patients feel by looking at websites like Fighting Fatigue , the National Fibromyalgia Association, and Focus on Fibromyalgia Inc (better known by its web address: fibromyalgiasucks.org and, yes, t-shirts are available).

Doctors who “care for” people with undiagnosed fibro are almost always no help whatsoever. Patient surveys confirm that the typical woman with fibro sees five physicians before she actually learns she has fibromyalgia. Until the internet increased awareness of the condition, most gave up after two or three doctors and accepted pain as their lot in life.

For the diligent ones, that fifth doctor probably said something like: “Well, I’m sorry to tell you this. It appears you have fibromyalgia. We don’t know much about it. Here are some pain meds. Go exercise—that’s supposed to help. Since it’s not a disease, there’s really not much we can do about it.”

And because fatigue accompanies fibro pain, when the person with fibro tries to exercise, she finds she can barely manage a fraction of what she handled with ease just a few years earlier. And that’s it. Pain seems to be her lot in life.

In actual fact, Fibromyalgia Awareness Month needs to be directed at the entire medical profession, including chiropractors. I have some experience in this area. During the past few months, I’ve been in different parts of the country giving lectures to physicians about fibromyalgia, and their overall lack of knowledge is appalling.

Most of the doctors I’ve met say they “never see fibro” or at the most have one or two patients, whom they refer to rheumatologists. Many still believe there’s “no such condition” and consider it “basically psychiatric” (and refer their patients to a psychiatrist). These are actual quotes from physicians I’ve met with and they are wrong, wrong, wrong.

Remember the game “hot potato”? That’s the way most fibro patients are treated, tossed around from one medical professional to the next.

Many rheumatologists also believe fibro is psychiatric. Psychiatrists don’t understand fibromyalgia at all and wonder why the rheumatologist sent the patient. After realizing the patient referred to them for alleged depression is basically (and reasonably) depressed because of chronic pain, the psychiatrist refers her to a pain management specialist. Pain specialists regard fibro patients as “needy and time consuming.”

Psychiatrists may not be recognizing vast numbers of fibro patients because the profession, fearing malpractice over “inappropriate behavior,” has become phobic about performing physical examinations on their patients. Fibromyalgia is painfully (pardon the pun) simple to diagnose. All that’s necessary is for the doctor to apply firm pressure to the classic “tender points” of fibromyalgia and watch the patient’s startled reaction to the jolt of pain the pressure induces.

What a mess! And believe me if any of these doctors actually had fibro, he’d be in the back seat of his BMW being driven to Mayo Clinic for help. What he doesn’t know is that Mayo would turn him away—they’re already swamped with fibro calls and will tell you that your local doctor should be able to manage your case as effectively as they can.

But doctors are not managing fibro. Most don’t “get it,” and the reason for this is a single glaring deficiency in medical education: that symptoms without actual disease somewhere in the body are not to be taken seriously as symptoms caused by a specific disease. Headaches are thus less compelling without a brain tumor to treat. Back pain is of routine interest until disc surgery is in order.

When you tell your doctor about your symptoms (e.g., “I have a headache,” or “I’m tired”) your physician is trained to look for an underlying disease responsible for your discomfort. He or she orders tests–blood tests, imaging, biopsies–a cornucopia of tests. If the tests show something, treatment will be started with the goal of curing you and relieving your symptoms.

If, however, the tests come up blank, to the doc’s way of thinking, his or her responsibilities are basically over. You’ve been reassured your symptoms are harmless, maybe received a prescription for a pill that might relieve (or mask) your symptoms. Intellectually, your physician is off the hook. Occasionally you might be referred to another physician who orders a different battery of tests, but generally doctors become less and less interested in you because to their way of thinking, there’s nothing wrong with you…nothing to “cure.”

I’ve had patients tell me that other doctors asked them “Why aren’t you pleased to learn nothing serious is going on? You should be relieved to hear we can’t find anything wrong with you. Your tests are normal.”

But you’re not normal. If you have undiagnosed fibro you’re thinking, “All this pain, this fatigue, can’t be normal.” If you know you have fibro and you’re told, “There’s nothing to be done,” then life looks very bleak indeed.

But please believe me–there is hope for fibro patients.

Next week: What’s Really Behind Fibro and Why It’s Flown Under the Radar.

Click here for Part 2.