Right up there with pain, the second most common symptom of fibromyalgia is a constant sense of profound exhaustion. Disability insurance companies, people who don’t have fibro, and (sadly) most doctors can’t appreciate the extraordinary degree of this fatigue.
Imagine waking up achy all over, feeling as if you never really slept, and then staggering through your day before crashing between 2 and 5 pm with even more fatigue.
If you actually have fibro, at this point you might try fortifying yourself with a Starbuck’s, but what you really want is to crawl into bed. If you’re still able to work, you plan no evening activities and you say “sorry, I can’t” to most invitations. If you’re not able to work, your house is a mess and your significant other is not happy with you lying around all day despite the fact that doctors have told you “all your tests are normal.”
It’s taken scientists about 40 years to figure out where this fatigue comes from. In the 1960s, when fibromyalgia itself was barely known, reports of patients who were constantly tired and felt flu-like achiness and poor sleep began to appear in medical journals. All the tests for fatigue were negative for the usual conditions, and some years later the mysterious condition was nicknamed “yuppie flu.” Later it was called chronic fatigue syndrome (CFS).
In an attempt to find a culprit for CFS, researchers pointed to variety of infections, including chronic mononucleosis, herpes, cytomegalovirus, candida (a yeast), and the then newly discovered Lyme disease, but nothing was consistently shown to cause CFS. A patient support group named their condition chronic fatigue immune dysfunction syndrome (CFIDS) based on the belief that a compromised immune system was the cause, but again, this wasn’t supported by research.
Now it’s pretty much agreed that the fibromyalgia and CFS are one and the same.
Several factors occur simultaneously to induce fibro, the most significant being how the human body responds to chronic stress. Please don’t feel bad if you have to read this next explanation a couple of times. Medical students must memorize all this and don’t enjoy it one bit.
As we discussed last week, when you experience a stressful event you go into a temporary “fight-or-flight” response. The full pathway, which operates at lightning speed when needed, looks like this:
• A “stress message” from your conscious brain is sent to the brain’s hypothalamus, which shoots it over to the brain’s pituitary (the master gland), which releases hormones that stimulate the adrenal glands (your stress-response glands). In response, the adrenals release their well-known hormone adrenalin, which puts your body into temporary overdrive. It’s this rush of adrenalin that gives a mother the super-human strength to lift a car off her trapped toddler.
This pathway is called the hypothalamic-pituitary-adrenal axis–HPA axis, for short.
Now imagine a sign dangling on your HPA axis that reads “WARNING: for emergency use only.” That’s the way it should be. The delicate HPA axis is protected by the brain chemical serotonin, which buffers stress. If you’re a low-serotonin person and life’s stresses (bad boss, financial strain, sick child, too much responsibility) exceed your stress buffer, your HPA axis is activated again and again. If your stressful life simply won’t let up, you exhaust your HPA system.
When you see the phrase “adrenal fatigue” or a natural practitioner says “you’ve fried your adrenals,” this is what’s being described. Conventional physicians rarely test patients for adrenal fatigue and generally are unaware of its existence. That’s because adrenal fatigue is not a “disease” but a physiologic response (your overused HPA axis) gone awry.
With longer-lasting stress (months on end of real-life stressors, but not the car-lifting type), a second adrenal hormone, cortisol, is triggered along with hormones from your thyroid gland. The thyroid controls the rate of your metabolism–how slow or fast your incredibly complex body will run.
During the initial days and even weeks of stress, you’ll have elevated levels of both thyroid and adrenal hormones, the increase being part of your normal stress response. But over time–and during the relentless stress of fibromyalgia–the HPA axis, including the thyroid and even sometimes your sex glands (ovaries or testicles, also under pituitary control) begin to “exhaust” as well.
Thus the primary source of fatigue in fibro is the exhaustion of the HPA axis + thyroid gland, which started out trying to protect you but simply dropped from exhaustion along the way. And this intricate action flies under the radar of conventional doctors testing for fatigue. It’s the old “your tests are normal” all over again.
Here’s how symptoms break down:
• Thyroid fatigue produces pervasive tiredness, dry skin, dry hair, weight gain, and cold hands and feet. The standard test result for an underfunctioning thyroid is high TSH (thyroid-stimulating hormone). But because TSH comes from your pituitary and it’s exhausted too, your TSH is spuriously low. And patients hear, “You can’t have an underactive thyroid–your TSH is low.”
• Adrenal fatigue also brings overwhelming fatigue, along with a mid-afternoon crash of still more fatigue between 2 and 4 pm. This occurs because you have a one-day supply of hormones in your adrenal glands that need to be restored each night during sleep. They aren’t replenished if, like most fibro patients, you’re not sleeping well.
• Ovarian fatigue leads to irregular periods, worsening PMS, infertility issues, and low or nonexistent sex drive.
In addition to exhaustion of the HPA axis, I want to include three unrelated sources of fibro fatigue:
• Chronic pain from any source–whether fibro, arthritis, or cancer–is itself exhausting.
• Fibro patients sleep very poorly. Unable to find comfortable positions in bed, they rarely achieve the deep, restorative sleep necessary for normal next-day activities. They awaken exhausted, feeling as if they hadn’t slept at all.
• Eventually the muscles of fibro patients atrophy. Because they’re exhausted and in pain, many who suffer with fibro live a bed-to-chair existence. Not moving just makes fatigue worse.
One last word about the long-ago suspected immune dysfunction of fibro-CFS. A well-conducted clinical study at DePaul University some years ago did come up with two positive tests among their hundreds of patients. One test showed evidence of adrenal fatigue. The other revealed minimal dysfunction of the immune system, basically the same abnormalities you’d expect if an immune system were experiencing unchecked stress and wasn’t functioning efficiently.
In other words, the mono, herpes, candida, et. al., weren’t causing the fibro-CFS. It was the reverse. The stress of fibro-CFS was impairing the immune system, allowing the emergence of these minor players. For decades, scientists were sidetracked by these microorganisms, believing them to be the “cause” of CFS, rather than the “result.”
Complicated, eh? It’s taken decades to figure this out.
Coming up: Gender discrimination in fibro pain…plus conventional and alternative treatments. And then we’ll return to our more varied health tip focus.
Click here for Part 4.