That Elusive Fibromyalgia

Today we're going to head down to our doctor's office with a complaint that he hears all too often: we have pain. We're tired. We get headaches, and our hands and feet might be numb in the morning. And along with that pain comes some stiffness. It's like, "Doc, I just don't feel all that great." Don't fret, because the doctor has heard it all before. But also don't expect to be able to guess what your doctor is going to say. The diagnosis of fibromyalgia — nonspecific pain that doesn't seem to have any particular source — is as controversial as just about any other subject at your doctor's office. Some believe it's a real physical condition, some believe it's purely psychogenic, and some think it doesn't exist at all. What is really known about this popular but vague diagnosis?

Everything about fibromyalgia is rife with red flags. Sham treatments for it are offered in magazine ads and on late-night television infomercials. You'll see it advertised on billboards. Books, websites, special diets, and worthless supplements are all marketed to sufferers just as aggressively as is the condition itself — the more people can be convinced that they have it, the more products they'll buy. Chapter and verse, fibromyalgia bears every single warning sign of a pseudoscience. But where it veers from this course and enters the realm of real science is that a growing number of medical researchers believe there is something real here, and some cases are now even proving to be treatable.

Much of the time, when we discuss the subject of whether conditions have a psychological cause or a physiological cause, we find a general trend that psychogenic conditions are best treated by psychotherapy, and physiological conditions are best treated with non-psychiatric medicine. Fibromyalgia appears to be a rare exception to this rule. Its causes have not been determined to be purely psychological, but it does seem to be best treated with psychiatric medicine, including both antidepressants and psychotherapy.

Have I confused you yet? Here's the thing: a complication with researching fibromyalgia is that so many of its symptoms are non-specific and are symptoms that everyone experiences sometimes just by virtue of being a living human being: pain with no obvious cause, fatigue with no obvious cause, trouble sleeping, stiffness, headaches, tingling, and something we call "fibro fog" which includes a variety of mental difficulties like trouble remembering, concentrating, or thinking. All of us have experienced most or all of these at some point in our life. And moreover, try to think of a medical problem that will not result in one or more of these symptoms — they're all very common. For this reason, a lot of doctors have maintained that there's no reason to introduce a new mysterious illness that we call "fibromyalgia" to explain symptoms that are to be expected regardless.

It's also important to note that the medical literature is already littered with various pain syndromes. A person who has general pain probably suffers from some syndrome that's already known; but the vast amount of fibromyalgia-related marketing thrown at the public these days has led many of these sufferers to self-diagnose with fibromyalgia, and sometimes react with hostility when offered a different diagnosis from a doctor.

But in some cases, we can't find any of these known syndromes, and the system-wide pain can be too severe to be explained away as just a symptom of getting older; it is actually completely debilitating for the worst sufferers. One way of looking at it that's gaining traction among doctors and researchers is to consider fibromyalgia to be a placeholder for some unexplained condition. Perhaps there is an undiscovered pathogen responsible for the pain. Perhaps it is a combination of conditions, perhaps it's part of some larger syndrome; and as with all conditions, it is a fact that in at least some patients, it is purely psychogenic. This doesn't mean that it's "all in their head"; psychogenic conditions are real physical maladies but the root cause is usually stress. Stress can have a powerful impact on general wellbeing. Stress can cause headaches, pain and stiffness, skin conditions, sleeplessness, heart conditions, the mental symptoms we're calling "fibro fog"; a whole range of real, measurable, physical symptoms. But it would make no sense to treat those symptoms individually; rather it makes sense to treat the stress, usually with psychotherapy and/or antidepressants or other psychiatric drugs, even simpler techniques like meditation and yoga. What we find is that once the stress is relieved, the physical symptoms resolve themselves.

Currently, these are the easiest fibromyalgia sufferers to treat, but they're often the hardest to get to agree to treatment. People hear "psychogenic" and they wrongly interpret it as being told they're crazy or that it's all in their head, when they know for a fact that they have real physical symptoms. Patients often react with hostility toward such a diagnosis, which is unfortunate and poses a real problem for the doctor.

The latest research finds that certain psychiatric drugs are proving effective at treating fibromyalgia even when the cause is completely unknown and is not necessarily considered psychogenic. A compelling reason for this might be that pain is a thing of the mind, and psychiatric drugs act on the brain. Presently there are three drugs approved in the United States to treat patients with a diagnosis of fibromyalgia: Lyrica, Cymbalta and Savella. Lyrica was originally approved to treat seizures and diabetic pain. Cymbalta treats depression, anxiety, and diabetic pain. Savella is the first drug approved specifically for fibromyalgia, but works the same as some antidepressants. Most fibromyalgia sufferers get relief from their symptoms from these drugs, but some don't.

Nor would we expect them to. When we have a condition as non-specific as what we're calling fibromyalgia, the chances that a single disease is responsible for all (or even most) of the cases becomes vanishingly small. Even when we look at only the most affected patients — those who are bedridden and/or unable to work or get through their day due to the pain — there may be as many different causes as there are patients. It's unlikely that fibromyalgia is "a" single disease; so it's fortunate that even though we may not be able to find the cause in many patients, we can successfully treat the symptoms and allow the patients to resume more normal lifestyles.

With greater attention focused on fibromyalgia in the recent Internet-centric decade, more and better research has been done and we are starting to nail down a few facts. We do know that it's much more common in women than in men, by at least a 2:1 margin — this is also the case with most psychogenic conditions, which adds to the confusion. We do know that it affects at least 2% of the population. We do know that it runs in families, so it's possible there's a genetic component. We know that psychological trauma, including deployment to war, is a significant factor. We know that fibromyalgia sufferers are far more likely to also suffer from depression, anxiety and post-traumatic stress disorder, suggesting a link. And perhaps most promising, we do know that brain scans of fibromyalgia sufferers show different responses to stimuli than do people who are not affected.

Neuroimaging research into fibromyalgia is in an early state, but the fact that some patterns are discernible is very encouraging. We already know that there are probably multiple causes of what we term fibromyalgia, and the brain imaging studies confirm this. Further research may allow us to define specific subgroups of fibromyalgia sufferers and come up with more effective, and better targeted, treatments. Research published in 2011 in Clinical Rheumatology made a number of interesting — albeit preliminary — findings. One of these was that patients with both depression and fibromyalgia tended to show greater sensitivity to painful pressure than did patients with depression alone; which is intriguing because depression is already known to be associated with greater sensitivity to pain.

This doubly-enhanced susceptibility to pain inputs suggests one of the therapies already in use for some fibromyalgia patients: the use of behavioral therapy intended to modify the response to a threat. Imagine watching a brain's neuroimaging response to a pain stimulus on a patient who is blinded to the source of a pain, and say we came up with a scale of 1 to 10. Let's say we rap the patient on the arm with a twig that shows a brain response that we'd categorize as a 5. Then say we took a red-hot iron and moved it close enough to the patient's arm to also register a 5. So far as the patient knows, both stimuli were equally painful. But if the patient is not blinded to the source of the pain, the twig looks a lot less scary than the red-hot iron. The patient would probably smirk at me if I gave him the same rap with the twig, but would completely panic and go into a major stress overdose if I approached with the red-hot iron, even if they knew I wasn't going to actually touch them with it. Behavioral therapy can seek to help patients better assess the threat level of a painful stimulus, help them find ways to cope with the pain emotionally, help them to devote a reasonable amount of attention to the pain rather than too much, or teach them ways to distract themselves from the pain. A characteristic that most fibromyalgia sufferers share is that they transition what should be a normal pain level into a debilitating pain level — whatever the mechanism, be a genetic problem, a neurotransmitter problem, or even just a psychogenic response. Regardless of the root cause, such behavioral therapy can probably benefit all sufferers (and can probably even help most people in general).

With fibromyalgia being so controversial, it's a shame that the uncertainty surrounding it manifests as a rift between its believers and its deniers rather than as common ground. If more people can accept the facts that fibromyalgia is real, that it's poorly understood, that it's probably both over-diagnosed and often misdiagnosed, and that it's treatable with drugs that are typically thought of as psychiatric, then the inevitable result would be that more patients would get better. Doctors and patients both have to increase their openness to the newest research surrounding the condition, and sufferers in particular have to be open to the possibility that their self-diagnosis is more than likely incorrect. It's equally important for the purveyors of quack remedies to cease inputting false information into an otherwise progressing — albeit slowly — field of research.

By Brian Dunning
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