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Fibromyalgia

The mysterious disease of pain, exhaustion, and mental fog

updated
by Paul Ingraham, Vancouver, Canadabio
I am a science writer and a former Registered Massage Therapist with a decade of experience treating tough pain cases. I was the Assistant Editor of ScienceBasedMedicine.org for several years. I’ve written hundreds of articles and several books, and I’m known for readable but heavily referenced analysis, with a touch of sass. I am a runner and ultimate player. • more about memore about PainScience.com

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 some intriguing ideas, but nothing solid yet. 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.

Classic fibromyalgia symptoms

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.

“Fibromyalgia” is like “UFO”

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.

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.

Neurologist Dr. Steven Novella, “Is Fibromyalgia Real?

Types of pain and where fibromyalgia fits in (or doesn’t)

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.

Fibromyalgia is something else, a dysfunction. It isn’t caused by any damage to the nervous system, but by 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 unknown lesions? Maybe someday we’ll know that fibromyalgia is caused by some kind of subtle damage to the nervous system, which would make it just another neuropathy after all, ho hum.4 It probably is a dysfunction, arising from widespread problems in a complex system, and no clear point of failure will ever be discovered.56

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.7 It’s the Greek way to say “pain disease.” For more naming possibilities, see The Basic Types of Pain.

What about “central sensitization”?

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.

Conditions that may be confused with fibromyalgia

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).

The particularly tricky relationship between fibromyalgia and myofascial pain syndrome

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,8 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.

Tender points vs. trigger points

Positional cervical cord compression and fibromyalgia

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).9

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.11 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 most PC3. 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!12

It would hardly be a shock if such a thing had been missed until now.

And then there’s the “autonomic arousal” thing!

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.

An avalanche of useless fibromyalgia research

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 199013 and then the important revisions in 2010/2011,1415 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 and your rheumatologist (or neurologist)

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.

Treatment advice for fibromyalgia

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.


About Paul Ingraham

Headshot of Paul Ingraham, short hair, neat beard, suit jacket.

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.

Recommended Reading

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.

What’s new in this article?

Four 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 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.

Publication.

Notes

  1. Jones GT, Atzeni F, Beasley M, et al. The prevalence of fibromyalgia in the general population: a comparison of the American College of Rheumatology 1990, 2010, and modified 2010 classification criteria. Arthritis Rheumatol. 2015 Feb;67(2):568–75. PubMed #25323744. BACK TO TEXT
  2. Www.fmperplex.com [Internet]. Wolfe F. 75% of Persons in the General Population Diagnosed with Fibromyalgia Don’t Have It, But It Is Worse Than That… – The Fibromyalgia Perplex; 2017 January 11 [cited 17 Jan 19].

    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
  3. Jensen TS, Baron R, Haanpää M, et al. A new definition of neuropathic pain. Pain. 2011 Oct;152(10):2204–5. PubMed #21764514.

    IASP has recently [2008] 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:

    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.

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  4. Multiple sclerosis attacks nerves in quite a dramatic way, which we could see in autopsies, but the lesions were invisible in living patients until the invention of MRI. It’s plausible that there are still plenty of biological “lesions” that we haven’t yet learned to detect, because they are just too small and transient. Despite all of our modern technological wizardy, most of the action in biology happens at the nanoscale, cells moving molecules and atoms around at dazzling speeds through the chaos of the molecular storm (brownian motion). There are probably nanoscale lesions. BACK TO TEXT
  5. Lyon P, Cohen M, Quintner J. An evolutionary stress-response hypothesis for chronic widespread pain (fibromyalgia syndrome). Pain Med. 2011 Aug;12(8):1167–78. PubMed #21692974. “Drawing on diverse findings in neurobiology, immunology, physiology, and comparative biology, we suggest that the form of central sensitization that leads to the profound phenomenological features of chronic widespread pain is part of a whole-organism stress response, which is evolutionarily conserved, following a general pattern found in the simplest living systems.” BACK TO TEXT
  6. BetterMovement.org [Internet]. Hargrove T. A Systems Perspective on Chronic Pain; 2014 Oct 23 [cited 16 Sep 12].

    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.

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  7. Kosek E, Cohen M, Baron R, et al. Do we need a third mechanistic descriptor for chronic pain states? Pain. 2016 Jul;157(7):1382–6. PubMed #26835783. PainSci #53276. BACK TO TEXT
  8. PS Ingraham. The Trigger Point Identity Crisis: The biological evidence that a trigger point is a lesion in muscle tissue. PainScience.com. 3314 words. BACK TO TEXT
  9. Chan CK, Lee HY, Choi WC, Cho JY, Lee SH. Cervical cord compression presenting with sciatica-like leg pain. Eur Spine J. 2011 Jul;20 Suppl 2:S217–21. PubMed #20938789. PainSci #53701.

    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).

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  10. Www.practicalpainmanagement.com [Internet]. Holman A. Using Dynamic MRI to Diagnose Neck Pain: The Importance of Positional Cervical Cord Compression (PC3); 2017 January 12 [cited 17 Jan 20].

    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
  11. Holman AJ. Positional cervical spinal cord compression and fibromyalgia: a novel comorbidity with important diagnostic and treatment implications. J Pain. 2008 Jul;9(7):613–22. PubMed #18499527. BACK TO TEXT
  12. Herzog R, Elgort DR, Flanders AE, Moley PJ. Variability in diagnostic error rates of 10 MRI centers performing lumbar spine MRI examinations on the same patient within a 3-week period. Spine J. 2016 Nov. PubMed #27867079.

    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.

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  13. Wolfe F, Smythe HA, Yunus MB, et al. The American College of Rheumatology 1990 Criteria for the Classification of Fibromyalgia. Report of the Multicenter Criteria Committee. Arthritis Rheum. 1990 Feb;33(2):160–72. PubMed #2306288. BACK TO TEXT
  14. Wolfe F, Clauw DJ, Fitzcharles MA, et al. The American College of Rheumatology preliminary diagnostic criteria for fibromyalgia and measurement of symptom severity. Arthritis Care Res (Hoboken). 2010 May;62(5):600–10. PubMed #20461783. BACK TO TEXT
  15. Wolfe F, Clauw DJ, Fitzcharles MA, et al. Fibromyalgia criteria and severity scales for clinical and epidemiological studies: a modification of the ACR Preliminary Diagnostic Criteria for Fibromyalgia. J Rheumatol. 2011 Jun;38(6):1113–22. PubMed #21285161.

    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”.

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  16. Cassisi G, Sarzi-Puttini P, Cazzola M. Chronic widespread pain and fibromyalgia: could there be some relationships with infections and vaccinations? Clin Exp Rheumatol. 2011;29(6 Suppl 69):S118–26. PubMed #22243559. BACK TO TEXT