Fibromyalgia is a label for an illness of chronic pain, fatigue, and mental fog that has no other explanation, a diagnosis of exclusion. It often goes with conditions like irritable bowel syndrome, migraines, and mood disorders. About 1–2% of the population suffer from this.1 Some people get better, but many don’t. There are no proven treatments, just a few promising approaches help some people.
The biology of fibromyalgia remains a mystery. There are intriguing theories only. Many professionals still assume it’s a psychogenic problem (much like migraines were until surprisingly recently). Many others now believe that fibromyalgia is a disease of neurological sensitization — an overactive alarm system — but this is unproven and awkwardly at odds with some of what we do know about the condition. We just don’t know what’s going on, even though fibromyalgia research is booming (because most of it is worthless).
Controversy, stigma, and quackery swirl around fibromyalgia like a bad smell. It is often not diagnosed when it should be, and even more often these days it is diagnosed when it shouldn’t.2 No medical speciality specializes in it. Rheumatologists and neurologists often get “stuck” with fibromyalgia patients, but have no idea what to do with them unless they’ve taken a special interest in the topic. Alternative medicine has rushed into the medical gap with a dizzying array of crackpot cures.
Here’s a good 1-minute primer on fibromyalgia from One-Minute Medical School:
Many fibromyalgia symptoms are maddeningly non-specific: that is, they could be the symptoms of practically anything, or nothing. Headaches are the single most common pain complaint, but most have no specific cause. Almost all diseases cause fatigue. And pain is the most basic response to biological adversity that there is. And every other person you pass on the street is depressed, anxious, insomniac, or all of the above. It’s almost like fibromyalgia’s symptoms are just a list of the most common sufferings of humanity. It’s only when they occur together — a strong, relentless pattern — that a fibromyalgia diagnosis can be taken seriously.
If you have unexplained chronic fatigue and pain aggravated by exercise, you have fibromyalgia by definition, because fibromyalgia is a description of those symptoms, not a diagnosis (explanation) of them per se. It’s like “unidentified flying object.” If an object is flying, and you don’t know what it is… it’s a UFO. That doesn’t mean it’s piloted by aliens, and a diagnosis of fibromyalgia doesn’t imply any specific cause either: fibromyalgia is the word we use to describe feeling a certain way, badly enough, for long enough. But the UFO could be piloted by aliens, and the fibromyalgia could be caused by a specific pathology.
MUS are the UFOs of medicine: medically unexplained symptoms. Just like a UFO technically refers to an unexplained phenomenon but there’s a popular suspicion about what’s really going on (aliens!), MUS are also unexplained by definition and yet there’s a popular belief about what’s really going on: psychosomatic! Others understand that there’s probably a better explanation:
Clearly there are many patients who have chronic diffuse pain, fatigue, poor sleep, and other comorbidities. These symptoms often take a great toll on quality of life. Nothing in the scientific discussion about fibromyalgia as a diagnosis calls into question these symptoms. The question is entirely about how we understand the possible cause or causes of these symptoms in order to guide our treatment and research.
Fibromyalgia is nearly synonymous with MUS. You could define fibromyalgia for a doctor by saying “it’s a case of MUS dominated by pain.” Calling it fibromyalgia might make it seem like something more specific, but it’s not: it’s still just a bunch of unexplained symptoms. It’s important to bear in mind that fibromyalgia is actually just a common pattern of unexplained symptoms, probably the most common one.
There are two main categories of pain: nociceptive and neuropathic. Fibromyalgia doesn’t seem to fit well into either. The most familiar kind of pain is nociceptive, caused by damage to tissues and reported to the brain for assessment. When the reporting system itself is damaged — a pinched nerve, say — you get neuropathic pain.
Two kinds of damage, two kinds of pain.Maybe someday we’ll know that fibromyalgia is caused by some kind of subtle damage to the nervous system & that would make it just another neuropathy after all, ho hum.
Fibromyalgia is something else, a third category, a dysfunction. It involves no confirmed damage to the nervous system, but its misbehaviour, and so it’s not welcome at the neuropathy club. It was before 2011! But the definition of neuropathy changed to officially exclude anything that didn’t involve a known lesion.3
Maybe there are unknown lesions? Maybe someday we’ll know that fibromyalgia is caused by some kind of subtle damage to the nervous system.4 There are at least two theories of subtle lesions of this type.5 That would make it just another neuropathy after all, ho hum. But for now it’s still more plausible that it’s a dysfunction, arising from widespread problems in a complex system, and no clear point of failure will ever be discovered.67 But who knows. Science is not finished with fibromyalgia.
Meanwhile, what do we call it? And other miserable pain problems (complex regional pain syndrome, irritable bowel syndrome) that arise from neurological dysfunction? No one has decided. File under “other.” FWIW, I favour “algopathic” pain: pathological perception/sensation.8 It’s the Greek way to say “pain disease.” For more naming possibilities, see The Basic Types of Pain.
Fibromyalgia involves a lot of sensory over-reaction to stimuli: more pain with less provocation, known as sensitization. This sensitivity is probably caused by the central nervous system. So, Central Sensitization in Chronic Pain.
Some patients even feel pain when touched softly (allodynia [Wikipedia]), a terrible thing. Fibromyalgia is hell.
It has become trendy lately to “explain” fibromyalgia with central sensitization, or to claim that central sensitization is the primary mechanism. CS clearly occurs in fibromyalgia, but it doesn’t explain it, and there’s plenty going on in fibromyalgia that is not explained by central sensitization (like fatigue and mental fog, for starters). It’s more like a more precise description than an explanation. Even if fibromyalgia is 90% CS, you still need to explain that, which is just as hard puzzle as why someone would get fibromyalgia. Why would someone get terrible central sensitization? It’s practically the same question.
Practically everything that can go wrong with human biology seems to be able to cause any of the classic non-specific symptoms that define fibromyalgia. Many people troubleshooting health problems have bitterly made the observation that “everything causes everything.” Nearly any symptom can and will occur in at least some people as an atypical variation of nearly any disease.
So this is tricky! But here are some of the conditions that are the most likely to masquerade as fibromyalgia for long periods.
Fibromyalgia can be confused with almost any condition that corrodes your vitality or causes weird aches and pains (which is quite a huge list), but without other obvious symptoms that would expose them for what they really are (which is mercifully shorter).
They may be related but distinct. Or it may be a word game: different words for different aspects of the same thing. But they are almost certainly not exactly the same thing.
Like fibromyalgia, “trigger points” is a label for a poorly understood phenomenon: sore spots in muscles, which sometimes feel like hard lumps. They are probably little micro cramps, small lesions in muscle tissue,10 as common and unpleasant as pimples (and sometimes a lot worse). When people seem to have many and severe trigger points, another arbitrary diagnostic label is often applied: “myofascial pain syndrome.”
Severe MPS and mild fibromyalgia are nearly impossible to tell apart. Trigger points and MPS may just be the tip of the fibromyalgia iceberg, or they may be different things with similar symptoms. No one knows.
Most people with fibromyalgia seem to have more than their fair share of trigger points, but it’s hard to tell because people with fibromyalgia tend to be sore eveywhere. And yet many people with trigger points would never be diagnosed with fibromyalgia. Robust, healthy people can have temporary trouble with a trigger point.
One of the most interesting ideas to emerge from the fibromyalgia research mess is the possibility that the pain is caused by a subtle pinching of the spinal cord, a form of myelopathy [Wikipedia] — symptoms caused by poor spinal cord function. The cervical spinal cord is a neurological bottleneck through which every nerve impulse from or to the body must pass. Symptoms caused by troule at this level of the spinal cord are notoriously variable and can cause symptoms essentially anywhere, such as shooting pains in the backs of the legs (sciatica).12
As all over the map as they are, there’s a suspicious overlap between the symptoms of myelopathy and fibromyalgia. Many fibromyalgia patients are quite myelopathy-ish, but without enough classic myelopathy symptoms to attract that diagnosis. Could they be related? Could fibromyalgia be sub-category of myelopathy?
That real possibility was exposed by a 2008 paper by Dr. Andrew Holman. His research, sadly still unreplicated, showed that minor spinal cord pinching was present in a shockingly high percentage of patients with fibromyalgia and chronic widespread pain: about seventy percent of them.13 Specifically, he reported positional cervical cord compression (PC3), which is pinching of the spinal cord that occurs only or mainly in specific positions (mostly with the head tilted back).
And treating PC3 seems to show some promise for treating fibromyalgia.Erratic low-grade irritation of the cervical spinal cord could actually be the direct, specific & mechanical cause of fibromyalgia.
Unfortunately, conventional MRI images, taken with the neck in a neutral position, will miss a lot of PC3 — at least half.14 Neurologists who would otherwise be interested in fibromyalgia patients may dismiss them because their myelopathy-like symptoms can’t be explained by a neutral MRI that does not reveal the PC3.
The implication of all this is that erratic low-grade irritation of the cervical spinal cord could actually be the direct, specific, and mechanical cause of fibromyalgia (possibly not the only cause, but a major one). It’s a dramatic and sensational hypothesis, but it’s not outrageous. We already know that myelopathy is spooky and unpredictable and often involves widespread pain. We also know that intermittent compression of nerves causes different kinds of symptoms in the peripheral nervous system than constant pressure, so it’s not much of a reach to suppose the central nervous system also responds a differently: an atypical, subtle myelopathy, caused by pinching that’s invisible to all but the most thorough MRI examination… a diagnostic technology that is notoriously unreliable!15
It would hardly be a shock if such a thing had been missed until now.
There’s one final mind-blowing piece of the PC3 puzzle: irritation of the cervical spinal cord may have unusual properties, different from other parts of the spinal cord. Specifically, PC3 may cause strong arousal of the autonomic nervous system… the same effect as severe chronic stress.
If that is the case, the implications would be astonishing: it would simultaneously provide an organic explanation for many cases of fibromyalgia and support the idea that the disease can also be caused by external stresses. That is an awfully potent explanation for a whole lot.
This suggests that stress could be the underlying mechanism of fibromyalgia — but it can be either life stresses, or “artificial” stress caused by a messed up spine. mind blown
All unproven. All needs more research. But there’s a lot of veeery interesting smoke here.
Dr. Fred Wolfe is about as expert as a fibromyalgia expert gets: he’s largely responsible for the official diagnostic criteria for fibromyalgia (the original in 199016 and then the important revisions in 2010/2011,1718 which ditched “tender points” and factored in symptom severity, in a nutshell).
Since 2013, Dr. Wolfe has been blogging erratically but superbly, and in this short post he explains (with snark!) how fibromyalgia is being buried by an avalanche of crappy, useless research. (And you could substitute nearly any other difficult or controversial condition, like “trigger points” for instance.)
PubMed reports 659 publications in the last 12 months relating to fibromyalgia. For those who are interested, there are 9,366 articles listed in the all the years that data are available. For 1990, the year the American College of Rheumatology 1990 fibromyalgia criteria were published, PubMed cites 95 articles. If you think that after all these years of research you and your patients are much better off, think again. A kind, conscientious physician treating a fibromyalgia patient in 1980 or 1990 will have done as well as the 2016 health workers with access to all of these new publications and expensive if not very efficacious medications.
Fibromyalgia often resembles the early stages of rheumatological diseases like lupus or ankylosing spondylitis. Indeed, fibromyalgia actually co-exists with them. And so fibromyalgia patients often end up being referred to rheumatologists… and then many patients and rheumatologists end up frustrated and baffled by each other.
Rheumatology is the medical speciality devoted to arthritis, particularly the inflammatory arthritides (autoimmune diseases). Rheumatologists are appropriately preoccupied with those very serious and complicated problems. Many of them sub-specialize in just one! In the big picture, it isn’t fair or reasonable to expect rheumatologists to “get” fibromyalgia. The only rheumatologists who do are the ones who have taken an interest and gone out of their way to study it. But they are the exception. In Canada, rheumatologists have been told by their professional organization that fibromyalgia is out of their scope of practice — they aren’t technically allowed to help fibromyalgia patients!
Of course, there’s no excuse for a rheumatologist being an insensitive jerk about it, either.
Neurology is the other medical speciality that attracts fibromyalgia cases, which is probably a less bad fit — although neurologists are also appropriately preoccupied with many serious conditions that are much better understood. Many of them sub-specialize in a disease (multiple sclerosis), or a class of neurological problems like movement disorders, and really don’t know the first thing about fibromyalgia, any more than pro football coach would know what to do with a volleyball team. But some neurologists generalize and take a professional interest in problems like fibromyalgia.
In all cases, there’s the potential for good help if the individual professional is keen on the topic of fibromyalgia. But there simply is no speciality that clearly lends itself to that. There just are no “fibromyalgia doctors.” Here are the closest remaining possibilities, after rheumatology and neurology:
Orthopaedists are the “carpenters” of medicine, generally focussing on surgical repairs of (allegedly) biomechanical problems, and sports medicine. They are mostly not a good choice for fibromyalgia patients.
Physical medicine & rehabilitation is one of the newest medical specialities, and they are basically like advanced physical therapists.
Pain specialists are usually board certified anesthesiologists, neurologists, physiatrists, psychiatrists, or oncologists with additional training in pain management. They often work in multidisciplinary pain clinics/programs. This can be a good route for fibromyalgia patients, but — yet again — fibromyalgia may be a second class citizen, overshadowed by more overtly serious and sensational diseases.
Psychiatrists and psychologists are potentially useful not because fibromyalgia is “all in your head,” but to help rule out (or treat) symptoms caused by anxiety and depression.
Massage therapists have little hope altering the progression of fibromyalgia, but they do offer something almost no other professional can: at least some temporary but significant symptom relief, and general soothing of the nervous system.
Constant moderate exercise is the closest thing there is to a proven therapeutic approach to fibromyalgia. Exercise is critical, but it’s got to be in the Goldilocks zone: never too much, never too little.
Treat the treatable. Fibromyalgia patients have other medical problems, like tendonitis, but suffer from them more and longer. Focus on taming whatever issues you have as best you can. It’s an uphill battle, but it’s all the more important. The fewer sources of pain, the better. PainScience.com has many self-help guides for common pain problems and injuries, and a guide to unusual sources of pain.
Treat sleep like it’s precious. Learn everything you can about insomnia and sleep problems, learn and practice the best possible sleep hygiene, and protect your sleeping conditions like it’s life or death. See The Insomnia Guide.
Change everything. Change your life. If fibromyalgia is a complex disease caused by many factors, if it’s a “meltdown” of our ability to adapt to stress, then seek out a different and better life. See Pain Relief from Personal Growth. Less drastically, but in the spirit, launch a campaign to eliminate every possible stress from your life — not easy, of course, but worthwhile regardless. Meditation, yoga, and related practices may be appealing and appropriate for some people.
Experiment with anti-inflammatory dieting. There’s no clear evidence that fibromyalgia is inflammatory, or that any kind of diet would help, but an anti-inflammatory diet is basically just a “heart healthy” diet — so low stakes, worth a shot, worst case scenario you’re eating healthier in general. See Chronic, Subtle, Systemic Inflammation.
“Ignore” it. I’m not being cute here, I swear. This isn’t a trite suggestion, it’s absolutely earnest. Pain is like noise pollution: the more you pay attention to it, the worse it gets. It thrives on attention and drama. Try to act normal and get on with your life as best you can. Embrace stoicism. For much more about this and other “mind over pain” strategies, see Pain is Weird.
There are drug therapies for fibromyalgia, but none of them show much promise. The Opioids for Chronic Aches & Pains are notably not effective. Alternatively, the efficacy of marijuana for chronic pain is modest but well-established.
Take vitamin D. Vitamin D deficiency is extremely common (especially in northern latitudes), strongly correlated with chronic pain in general and fibromyalgia in particular, and safe to supplement. See Vitamin D for Pain.
I am a science writer, former massage therapist, and I was the assistant editor at ScienceBasedMedicine.org for several years. I have had my share of injuries and pain challenges as a runner and ultimate player. My wife and I live in downtown Vancouver, Canada. See my full bio and qualifications, or my blog, Writerly. You might run into me on Facebook or Twitter.
I think this is the most credible and useful of the many fibromyalgia books available is Fibromyalgia: The Final Chapter. This article is just a primer: go read Dr. Goldenberg’s book next.
“DOCTOR MASSEUSE: Or My Personal Pain Puzzle,” by Jared Updike: a practical and hopeful article by a PainScience.com reader about wrestling with fibromyalgia over the last few years, more or less successfully. But it wasn’t easy:
What do you do when all your effort backfires and makes things worse, where you feel like your body is allergic to effort? (And you tried "resting" or doing nothing for months but that clearly did not work either?) Especially if you are the type of person that thrives on effort (professional life and hobbies and ways to blow off steam?)
For several years, the pain, fatigue, isolation, anxiety and low mood cycles were hell. The harder I tried, the worse it made everything: I was used to trying harder making things better, but this was its own beast. During this time, I had trouble walking without my muscles (eventually my whole system) complaining for days. I had trouble driving. I felt trapped in my apartment.
Jared perfectly demonstrates a thoughtful, systematic approach to learning about fibromyalgia and experimenting with treatments. He’s open-minded, but — crucially — not too open-minded. His writing about that process is a great bonus, clear and interesting. The main article is short, but some of his “Additional Notes” are actually longer and the best part: be sure to click/tap to show those.
Five updates have been logged for this article since publication (Jan 21st, 2017). All PainScience.com updates are logged to show a long term commitment to quality, accuracy, and currency. more
Like good footnotes, update logging sets PainScience.com apart from most other health websites and blogs. It’s fine print, but important fine print, in the same spirit of transparency as the editing history available for Wikipedia pages.
I log any change to articles that might be of interest to a keen reader. Complete update logging started in 2016. Prior to that, I only logged major updates for the most popular and controversial articles.
See the What’s New? page for updates to all recent site updates.
— Added small-fibre neuropathies and positional cervical cord compression to the differential diagnosis section. Expanded the description of relevant medical specialities. Added a paragraph about medically unexplained symptoms (MUS). Miscellaneous editing.
— Added an introduction to the differential diagnosis section (“everything causes everything”!), and items about B12 deficiency and celiac disease.
— More detail about positional cervical cord compression; beefed up the list of conditions that can be confused with fibromyalgia; added an expert quote and an important reading recommendation; miscellaneous editing.
— Added a whimsical analogy between UFOs and fibromyalgia.
— Substantive editing.
This is a scholarly commentary on the substantial over and under diagnosis of fibromyalgia, with an estimate 75% of people with diagnosis actually not fitting diagnostic criteria, about 1.5% of the US population:
By our calculations almost 3 million people who do not meet fibromyalgia criteria have been given a fibromyalgia diagnosis. At the other end of the spectrum, there are almost 3 million persons who satisfy fibromyalgia criteria, but have not been diagnosed with the disorder by a physician.
The authors argue that misdiagnosis is driven more by “socially-constructed factors” like pharmaceutical companies aggressively teaching doctors to diagnose fibromyalgia and prescribe (unproven) drugs for it; patient advocacy groups trying to legitimize the diagnosis; and doctors seeking prestige by publishing about fibromyalgia.
They also make some important points about the state of our understanding of fibromyalgia along the way, most notably that central sensitization remains both unproven and problematic as a major cause or mechanism of fibromyalgia.BACK TO TEXT
IASP has recently  published a new definition of neuropathic pain according to which neuropathic pain is defined as ‘pain caused by a lesion or disease of the somatosensory system.’ This definition replaces the 17-year old definition that appeared in the Classification of Chronic Pain published by IASP in 1994, which defined neuropathic pain as ‘pain initiated or caused by a primary lesion, dysfunction, or transitory perturbation of the peripheral or central nervous system’. Even though the definition has not been changed dramatically, there are two important changes in the new version: (1) the word ‘dysfunction’ has been removed and (2) a lesion or disease affecting the nervous system has been specified to be a lesion or disease of the somatosensory system.
The whole paper is excellent, but skipping to the cogent conclusion:
BACK TO TEXT
A definition of neuropathic pain is only useful if it distinguishes conditions in a clinically meaningful way. If the definition does not provide additional benefit in terms of understanding and treating the condition(s), then there is no reason to keep it. Hopefully, the new definition of neuropathic pain will act as a stimulant to discuss the definition in more detail and provide input for studies that can be used to test the value of the definition.
This deep but beautifully readable article explains, with many pictures and apt examples, how “chronic pain is often driven by dysregulation of a ‘supersystem’ that coordinates defensive responses to injury. The supersystem results from dynamic interaction between different subsystems, most notably the nervous system, immune system, and endocrine system.” It’s hard to believe, but the article also manages to make this information seem quite practical.BACK TO TEXT
A remarkable article for a medical audience, technical and scholarly but cogent, exploring fascinating potential connections between PC3 and/or Chiari malformation and fibromyalgia and chronic widespread pain.BACK TO TEXT
A report on two cases of cervical spinal cord impingement causing leg pain — both examples of pain at a location unusually remote from a subtle lesion (referred pain) — both successfully treated surgically. Notably, both cases involved previous lumbar spine problems.
Interestingly, such distant referred pain is tangentially relevant to the hypothetical phenomenon of cervical spinal cord irritation causing fibromyalgia (see Using Dynamic MRI to Diagnose Neck Pain).BACK TO TEXT
This study demonstrates that much more information can be obtained by imaging the neck in a range of positions (dynamic MRI), as opposed to just a neutral position. 50 patients on their way to neck surgery to help with spinal cord trouble were much more thoroughly scanned than they normally would have been. Cord impingement was spotted in just 17 patients in the neutral position, but thirty-seven in extension (and several in flexion as well). Cord inflammation was visible in just 13 patients in neutral position but twenty in a flexed position. The authors concluded that “Dynamic MRI is useful to determine more accurately the number of levels where the spinal cord is compromised.”BACK TO TEXT
In this study, one patient with sciatica was sent for ten MRIs, which produced 49 distinct “findings,” 16 of them unique, none of which occurred in all ten reports. On average, each radiologist made about a dozen errors, seeing one or two things that weren’t there about missing about ten things that were. Yikes. Read a more detailed and informal description of this study.BACK TO TEXT
The original ACR diagnostic criteria for fibromyalgia were published in 1990 (Wolfe) and the first major revision was published in 2010 (Wolfe), and this paper added the FMS symptom scale, “which measures what the authors call the overall ‘fibromyalgianess’ of a patient.”
This paper is not directly useful to patients, but Neha Garg does a good job of explaining it: New and Modified Fibromyalgia Diagnostic Criteria. See also Wolfe’s 2015 paper, “Editorial: the status of fibromyalgia criteria”.BACK TO TEXT