Monday, April 27, 2009

Tackling Three Fibromyalgia Misconceptions

Posted on/at 8:09 AM by The Goddess

There are three things I hear repeated over and over about fibromyalgia, both on the internets and off, that have really been bothering me. Aside from the usual well-intentioned but wrong-headed comments such as, "everyone has aches and pains, and gets tired sometimes," and "you're just out of shape... get some exercise" (don't get me started), there are other, even more insidious remarks and beliefs that I've heard, even from doctors.

1. "It's all in your head" or "You're just depressed"

Well of course it's in my head! That's where all pain is. No brain, no pain. I do want to clear up the misconception that fibromyalgia and depression are inseparably linked. Yes, it's true that many people with FM end up developing depression. It's also true that some people who have depression are struck by fibromyalgia. Studies have shown that there is a strong correlation between the two, and those of us who have both know well that each condition exacerbates the other, causing us to spiral down and get worse. In addition, antidepressants have been proven to help depression, of course, but also alleviate the symptoms of FM.

Correlation does not imply cause and effect. I believe that in the near future, research will bear out my belief that one does not cause the other, but rather that both FM and depression are caused by the same chemical imbalance of neurotransmitters in the brain. I suspect that a deficit of serotonin, norepinephrine, and possibly dopamine as well is the culprit for setting off both clinical depression and fibromyalgia.

This is why I cringe when I hear the "all in your head" cause of FM. Yes, that's where the imbalance is located, but the same can be said for the common cold, or cancer, or anything else. It's all in your "_____".

2. "You need to minimize stress/you're too stressed out"

This one makes me livid. People quote studies that "prove" that stress causes illness. Even my doctor has fallen for this cloudy reasoning on occasion.

First of all, define "stress". How did the studies measure it? How did they prove that this so-called "stress" was the cause of the illness?

Upon reading through these studies, I find that there are two camps. The first simply calculates whether illness struck within a "stress window". For example, the patient developed FM symptoms within six months of a divorce or a new job, a baby, new lover, turning forty etc.

That's like asking if I got ill within six months of my birthday. Of course I did. The odds are excellent that you can think of some life stressor that occurred around the time you got sick, especially in hindsight, as we tend to look back and try to find a cause for our misfortune.

This camp says there's no such thing as good or bad stress; it's all the same. Most people can come up with at least one incident per year that can be lumped into the life stressor category. Did that cause the fibromyalgia? Almost certainly not.

The second group of studies in the "it's just stress" theory of illness are even more suspect. They are based on anecdotal evidence of perceived stress, asking basically, "how stressed are you?"

Obviously, people are more stressed out when they are feeling unwell. The job they once loved when they were well can become a living nightmare when they are dealing with pain, fatigue, unreliable bowels, memory problems, and the multitude of other issues that go hand in hand with FM.

Normally, I love to hear my kids playing together. If you ask me on a good day, I'll smile and tell you it's not stressful at all, but on my bad days it becomes overwhelming. The stimulus itself (that of my kids playing and making noise) hasn't changed. What has changed is the number of stimuli I have to process at once, and thus my perception of this particular one.

This is especially true if one of those stimuli is unpleasant. Basic psychology tells us that exposure to one unpleasant stimulus causes other stimuli to be perceived as worse than they would be if encountered on their own. In other words, smelling a bad odor can cause a person to perceive pain as more intense than it would have been if they had not smelled that odor.

Put simply, to go back to my example, being in pain caused the stimulus (hearing my kids play) to be experienced as a negative stress. Our brains are hard-wired to remember negative experiences much more readily that positive ones. Ergo, "My kids are screaming; it's stressing me out and giving me a headache" is more likely to be the explanation, rather than, "The noise my kids are making is more unpleasant than normal because I have a headache."

Therefore, the way those studies are set up is fundamentally flawed. The evidence is not measurable, it is anecdotal, and the very nature of it is biased towards attributing cause and effect incorrectly.

My life is so much less "stressful" now than it was before I got sick. I'm much more relaxed now than ten years ago. In fact, the only significant "perceived stress" in my life stems from being ill. Since the stress of being ill obviously didn't cause my illness, stress must not be the cause of FM. Most certainly, if eliminating stress were the answer, I'd be cured.

3. Fibromyalgia is what they call it when doctors don't know what's wrong with you

Ah... the good old wastebasket diagnosis theory. It goes hand in hand with "there's no such thing as fibromyalgia" and it infuriates me.

Fibromyalgia is not a throw-away diagnosis, a catchall to explain every ill that doctors are too busy or too lazy to figure out. It's not even true that there's no test for it. There are lab tests such as brain scans and spinal taps as well, but they are expensive, not readily available, and not necessary for a diagnosis.

Just as illnesses such as Ehlers-Danlos syndrome or Menkes disease are names applied to a specific set of symptoms, the same holds true for FM. To be diagnosed with FM, you must meet two very specific criteria:

  • widespread pain in all four quadrants of at least three months duration.
  • at least 11 of 18 specified tender points upon palpation. (By the way, over 75 tender points exist in FM, but most are not used in the diagnostic process).

If you do not meet these two diagnostic criteria, you do not have fibromyalgia, plain and simple. Doctors don't simply throw the diagnosis out there if you walk into the office complaining of pain and fatigue. They run lab tests to eliminate other causes, ask careful questions, poke and prod. If anything, most doctors are cautious about applying the FM label; most likely, they'd rather you had some illness they can cure. It's definitely not a catch-all.

It's true that there are many and varied symptoms associated with the diagnosis that seem unrelated, but if you don't meet the main two, they aren't going to tell you definitively you have FM. One of the problems with getting a diagnosis is that the symptoms DO seem unrelated, trivial, and they come and go. For years I went to see doctors for each specific problem (shoulder pain, knee pain, bowel pain), but it wasn't until I went in and told my doctor in frustration that everything hurt all the time that the puzzle was solved.

Up to that point, I'd get a test done, like an xray on the knee, and be told to go home, rest and ice it. It never occurred to me that my iffy bowels were in any way related to the ache in my joints, or that the fatigue I felt had a cause other than lack of sleep. Without the other clues, there simply was no reason for the doctor to suspect FM. I had dozens of individual diagnoses, but nothing that explained why I always felt crappy.

In my case, I was sick for nearly seven years before the pieces came together to form the big picture that is FM. The diagnosis did not come in one office visit. It took blood tests to rule out other causes, questions about everything under the sun, and a visit to a specialist, before I got the name of this damn disease.

There is something specific causing my problems. it's called fibromyalgia. It's not new. Symptoms bearing a remarkable resemblance to FM are mentioned in the old testament of the bible. Doctors have known about it since the 1800s. It's been called rheumatism, fibrositis, and hysterical paroxysm. The term fibromyalgia was coined in 1976, but it wasn't until the diagnostic criteria I discussed above were published in 1990 that the disease came into the public spotlight.

Fortunately, in the twenty years since, fibromyalgia become understood by most doctors. There are a few hold-outs, as there always are, but they are relatively few.

This is a case where the internet has done as much harm as good, because it allows proliferation of these three misconceptions. Too few people stop and think critically about what they read. It's simply too easy to copy and paste misinformation from one website to another.

Whew! That's it in a nutshell, as it were. Ahem.

So, fellow spoonies... what's been your experience? Have you run across these attitudes? Do you disagree with my take on them? You wouldn't be the first!


LFA said...

Can you pass this along via your blog, and to all your contacts?

Lupus Foundation of America Needs Your Help -- Urge Your Senators to Cosponsor S. 1630, the Affordable Access to Prescription Medications Act

Go to

Click on the link "Urge Your Senators to Cosponsor S. 1630, the Affordable Access to Prescription Medications Act," enter your zip code in the box called “Call Now” and click on the “go” button. You’ll then be presented with the contact information for your senators, as well as get talking points for what to say when you call.

Please ask your family, friends and coworkers to call on your behalf as well.

Mia Myka said...

I tried repeatedly to put my comments on here and click on wordpress but it kept telling me I had illegal characters. Hmm,very difficult to post comment on here,but anywayz..liked your blog entry a lot :)

Long time no Twitter :)
1cutechicwitfm on Twitter

Anonymous said...

Yes, I've gone through excactly the same comments/attitudes not only from people in general but from doctors as well, which is much worse. There is a massive lack of reliable information within the health services and in the community.

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