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!

I spent the day reading one of my old college texts and ran across this poem by Coleridge. Although it was assigned many times during my career as an English major, I'd never spent the time on it that it deserved.

Now, I find, it speaks to me. I expect that anyone who deals with invisible illness, especially the ones that involve pain and the resulting depression, can relate. This poem pretty much sums up how I've been feeling the past couple of weeks.

For inquiring minds, a discussion of the work can be found at SparkNotes.


Dejection: An Ode

Late, late yestreen I saw the new Moon,
With the old Moon in her arms;
And I fear, I fear,
My Master dear!
We shall have a deadly storm.


Ballad of Sir Patrick Spence




I


Well! If the Bard was weather-wise, who made
The grand old ballad of Sir Patrick Spence,
This night, so tranquil now, will not go hence
Unroused by winds, that ply a busier trade
Than those which mould yon cloud in lazy flakes,
Or the dull sobbing draft, that moans and rakes
Upon the strings of this Æolian lute,
Which better far were mute.


For lo! the New-moon winter-bright!
And overspread with phantom light,
(With swimming phantom light o'erspread)
But rimmed and circled by a silver thread)


I see the old Moon in her lap, foretelling
The coming-on of rain and squally blast.


And oh! that even now the gust were swelling,
And the slant night-shower driving loud and fast!
Those sounds which oft have raised me, whilst they awed,
And sent my soul abroad,


Might now perhaps their wonted impulse give,
Might startle this dull pain, and make it move and live!




II


A grief without a pang, void, dark, and drear,
A stifled, drowsy, unimpassioned grief,
Which finds no natural outlet, no relief,
In word, or sigh, or tear--


O Lady! in this wan and heartless mood,
To other thoughts by yonder throstle woo'd,
All this long eve, so balmy and serene,
Have I been gazing on the western sky,
And its peculiar tint of yellow green:


And still I gaze--and with how blank an eye!
And those thin clouds above, in flakes and bars,
That give away their motion to the stars;
Those stars, that glide behind them or between,
Now sparkling, now bedimmed, but always seen:
Yon crescent Moon, as fixed as if it grew
In its own cloudless, starless lake of blue;
I see them all so excellently fair,
I see, not feel, how beautiful they are!




III


My genial spirits fail;
And what can these avail
To lift the smothering weight from off my breast?
It were a vain endeavour,
Though I should gaze for ever
On that green light that lingers in the west:
I may not hope from outward forms to win
The passion and the life, whose fountains are within.




IV


O Lady! we receive but what we give,
And in our life alone does Nature live:
Ours is her wedding-garment, ours her shroud!
And would we aught behold, of higher worth,
Than that inanimate cold world allowed
To the poor loveless ever-anxious crowd,
Ah ! from the soul itself must issue forth
A light, a glory, a fair luminous cloud


Enveloping the Earth--
And from the soul itself must there be sent
A sweet and potent voice, of its own birth,
Of all sweet sounds the life and element!




V


O pure of heart! thou need'st not ask of me
What this strong music in the soul may be!
What, and wherein it doth exist,
This light, this glory, this fair luminous mist,
This beautiful and beauty-making power.
Joy, virtuous Lady! Joy that ne'er was given,
Save to the pure, and in their purest hour,
Life, and Life's effluence, cloud at once and shower,
Joy, Lady! is the spirit and the power,
Which wedding Nature to us gives in dower
A new Earth and new Heaven,
Undreamt of by the sensual and the proud--
Joy is the sweet voice, Joy the luminous cloud--


We in ourselves rejoice!
And thence flows all that charms or ear or sight,
All melodies the echoes of that voice,
All colours a suffusion from that light.




VI


There was a time when, though my path was rough,
This joy within me dallied with distress,
And all misfortunes were but as the stuff
Whence Fancy made me dreams of happiness:
For hope grew round me, like the twining vine,
And fruits, and foliage, not my own, seemed mine.
But now afflictions bow me down to earth:
Nor care I that they rob me of my mirth;


But oh! each visitation
Suspends what nature gave me at my birth,
My shaping spirit of Imagination.
For not to think of what I needs must feel,
But to be still and patient, all I can ;
And haply by abstruse research to steal
From my own nature all the natural man--
This was my sole resource, my only plan :
Till that which suits a part infects the whole,
And now is almost grown the habit of my soul.




VII


Hence, viper thoughts, that coil around my mind,
Reality's dark dream!
I turn from you, and listen to the wind,
Which long has raved unnoticed. What a scream
Of agony by torture lengthened out
That lute sent forth!
Thou Wind, that rav'st without,
Bare crag, or mountain-tairn, or blasted tree,
Or pine-grove whither woodman never climb,
Or lonely house, long held the witches' home,
Methinks were fitter instruments for thee,
Mad Lutanist! who in this month of showers,
Of dark-brown gardens, and of peeping flowers,
Mak'st Devils' yule, with worse than wintry song,
The blossoms, buds, and timorous leaves among.
Thou Actor, perfect in all tragic sounds!
Thou mighty Poet, e'en to frenzy bold!


What tell'st thou now about?
'Tis of the rushing of an host in rout,
With groans, of trampled men, with smarting wounds--
At once they groan with pain, and shudder with the cold!
But hush ! there is a pause of deepest silence!
And all that noise, as of a rushing crowd,
With groans, and tremulous shudderings--all is over--
It tells another tale, with sounds less deep and loud!


A tale of less affright,And tempered with delight,
As Otway's self had framed the tender lay,--


'Tis of a little child
Upon a lonesome wild,
Not far from home, but she hath lost her way:
And now moans low in bitter grief and fear,
And now screams loud, and hopes to make her mother hear.




VIII


'Tis midnight, but small thoughts have I of sleep:
Full seldom may my friend such vigils keep!
Visit her, gentle Sleep! with wings of healing,
And may this storm be but a mountain-birth,
May all the stars hang bright above her dwelling,
Silent as though they watched the sleeping Earth!


With light heart may she rise,
Gay fancy, cheerful eyes,
Joy lift her spirit, joy attune her voice;
To her may all things live, from the pole to pole,
Their life the eddying of her living soul!
O simple spirit, guided from above,
Dear Lady! friend devoutest of my choice,
Thus may'st thou ever, evermore rejoice.

Samuel Taylor Coleridge
April 4, 1802