A Rational Guide to Fibromyalgia The science of the mysterious disease of pain, exhaustion, and mental fog

Fibromyalgia is an unexplained and mostly untreatable illness of chronic pain, fatigue, and mental fog affecting about 1–2% of the population. Some recover naturally. The label is often not used when it should be and also often used when it shouldn’t. Fibromyalgia is associated with (and may be related to) conditions like irritable bowel syndrome, migraines, mood disorders, inflammatory arthritis, and especially the pain of “trigger points” (sensitive patches of muscle). Its many non-specific symptoms are routinely confused with many more conditions.

Controversy, stigma, quackery, and junky science swirl around fibromyalgia like a bad smell. No medical speciality specializes in it. Rheumatologists and neurologists often get “stuck” with fibromyalgia patients, and have no idea what to do with them. Alternative medicine has flooded the knowledge gap with many bogus theories and related cures, like excess phosphate, adrenal fatigue, or “bad energy.” Many pros still assume fibromyalgia is “all in your head” or a character weakness, but studies have shown that fibromyalgia does have a biological fingerprint.

Regular moderate exercise seems to be helpful, but can backfire. Patients need to stay as healthy as possible otherwise, especially protecting sleep as much as practical, and avoiding drugs/alcohol/smoking. Vitamin D supplementation is a worthwhile experiment for many. No medications are proven to be helpful.

Fibromyalgia” is basically widespread chronic pain without a known cause, the ultimate non-diagnosis. Some people will eventually discover a specific cause for their pain — there are many surprising causes of pain that can get overlooked for years at a time — but many never do.

More precisely now: fibromyalgia is a label for an illness of chronic pain, stiffness, 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.

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. There are no proven treatments, basically zero medical concensus on how fibromyalgia should be treated.3Alternative medicine has rushed into the medical gap with a dizzying array of crackpot cures.

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.

Classic fibromyalgia symptoms

  • chronic widespread pain and stiffness4
  • sore all over
  • excessive episodes of pain in specific areas, especially the neck and back
  • cannot sleep, never feel rested
  • fatigue
  • headaches
  • mood disorders (depression, anxiety disorder)
  • mental fog (the infamous “fibrofog”)
  • irritable bowel syndrome

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. Most 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, dominated by pain — that the idea of fibromyalgia should be taken seriously.

“Fibromyalgia” is like a “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 an explanation of them, not a diagnosis per se.

YOU: I have unexplained chronic pain.
DOCTOR: You may have fibromyalgia.
YOU: That’s literally what I just said.

It’s like a medical “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.

Neurologist Dr. Steven Novella, “Is Fibromyalgia Real?”

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.About footnotes. There are 74 footnotes in this document. Click to make them pop up without losing your place. There are two types: more interesting extra content,1

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 19905 and then the important revisions in 2010/2011,67 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.

This is important to bear in mind for the rest of the article. There is very little solid scientific ground in this topic.

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 third category, a dysfunction. It involves no confirmed damage to the nervous system, just its apparent 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.8

Maybe there are unknown lesions? Maybe someday we’ll know that fibromyalgia is caused by some kind of subtle damage to the nervous system.9 There are at least two theories of subtle lesions of this type.10 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, probably at least partially heritable,11 and so no definite and specific point of failure will ever be discovered.1213 But who knows. Science is not finished with fibromyalgia. Hell, it’s hardly begun.

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.14 It’s the Greek way to say “pain disease.” For more naming possibilities, see The 3 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.

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.

Maybe it’s the constant irritation of systemic inflammation, though. I think that might get me feeling mighty sensitive!

Inflammation as a driver of sensitization

Fibromyalgia patients seem to be on fire a little bit: in 2017, Bäckryd et al studied inflammatory markers in fibromyalgia patients in much greater detail than ever before, and identified an “extensive inflammatory profile.”15 It’s conceivable that this is caused by sensitization, but it’s more likely that being constantly inflamed all over for a long time turns people in wrecks of sensitization.

If fibromyalgia patients are more inflamed than sensitized, that doesn’t really help us all that much, because we still don’t know why people get so inflamed — it’s almost as much a puzzle as the sensitization! But it does feel a little less bizarre than a malfunction consisting of “pure” sensitization. Bäckryd et al write:

Fibromyalgia seems to be characterized by objective biochemical alterations, and the lingering characterization of its mechanisms as essentially idiopathic or even psychogenic should be seen as definitively outdated.

But they don’t attempt an explanation of the inflammation they found!

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 occurin 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.

  • Autoimmune diseases like lupus and ankylosing spondylitis are often extremely difficult to diagnose in their early stages and may resemble fibromyalgia.
  • Myelopathy (the consequences of interference with the spinal cord), much more about this below.
  • Myofascial pain syndrome, a closely related diagnosis of exclusion that mostly exists to try to explain widespread pain (and not so much the fatigue and malaise that fibromyalgia also involves). More on this below.
  • Mood disorders (depression, anxiety disorder), all of which can cause surprisingly intense physical symptoms, including and especially pain and fatigue
  • Vitamin D deficiency is surprisingly common, hard to rule out, and its symptoms are so similar to fibromyalgia that they are practically twins. For much more information, see Vitamin D for Pain. And there’s a third twin …
  • Vitamin B12 deficiency is a clinical clone of D deficiency — major symptom overlap, surprisingly common, unreliable testing — but is often more ominous and difficult to treat. See Misconceptions about a B12 deficiency.
  • Celiac disease is an “allergic” reaction to gluten, the protein in wheat, barley, rye that makes bread scrumptiously chewy. It is yet another surprisingly common and under-diagnosed condition, notorious for causing a bewildering array of symptoms, and (importantly) not necessarily digestion trouble (although that is common). Countless people have been probably been labelled with fibromyalgia before finally getting a celiac diagnosis. And then there’s the controversial and complicated topic of gluten intolerance.
  • Hypothyroidism (which is, fortunately, relatively easy to rule out decisively).
  • Some cancers in their early and middle stages can cause mostly just pain and malaise. What finally usually makes a cancer obvious is lumps, weight loss, and the development of other acute symptoms as tumors get big enough to cause trouble.
  • Lyme disease (Lyme borreliosis) is an infection that notoriously causes pain, fatigue, stiffness, but also involves enough other distinctive symptoms to tell it from fibromyalgia.
  • Small fiber peripheral neuropathy is caused by damage to the most delicate nerves in the body, the unmyelinated “bare wires” of the nervous system. This causes erratic pain, weird sensations, and numbness.16 It has many possible causes, including some of the conditions above, and a large percentage of cases are never explained. It’s also possible that SFN is actually a cause or consequence of fibromyalgia. For now, I will not examine this topic in detail, because of a very high “maybe, maybe not” factor.
  • Positional cervical cord compression is pinching of the spinal cord in specific positions only. The erratic and often slight irritation of the spinal cord can cause an incredible variety of symptoms, and is another possible cause of fibromyalgia: more below.
  • Myalgic encephalomyelitis (also known, incorrectly, as chronic fatigue syndrome) is an infectious neurological disease with similar symptoms, but worse and different in key details. There’s a full section on this topic below.

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 signs/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 another 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,17 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,” which is yet another way of saying “chronic pain syndrome,” but this name implies a soft tissue origin.

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 everywhere. 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

  • Trigger points describe localized pain that can occur in almost any location, but typically occurs in muscles, and which can come and go like the weather, and are often not associated with any other symptoms.
  • The tender points of fibromyalgia are a carefully chosen set of spots that tend to be sensitive on anyone, but are excessively sore with FM. It’s not that FM makes those spots sore — it’s that FM makes everything sore, which is most obvious at those spots.

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 trouble at this level of the spinal cord are notoriously variable and can cause trouble essentially anywhere, such as — and this is not widely appreciated — shooting pains in the backs of the legs (sciatica).19

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?

This possibility was first exposed in a 2004 paper by Heffez et al,20 and then substantiated in a follow-up study in which they successfully treated 40 fibromyalgia patients by surgically relieving the pressure on their spinal cords.21 This research has virtually been ignored by everyone except Dr. Andrew Holman. His 2008 replication study 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.22Specifically, 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. (There’s a whole section about treating PC3 below.)

Unfortunately, conventional MRI images, taken with the neck in a neutral position, will miss a lot of PC3 — at least half.23Neurologists 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!24

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 lifestresses, 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. There’s even evidence of a similar link with chronic fatigue syndrome!25 And speaking of CFS.…

The fatigue connection: is fibromyalgia just CFS/ME with extra pain?

Chronic fatigue syndrome (CFS), myalgic encephalomyelitis (ME), and fibromyalgia all often get conceptually tangled up. Many people have speculated — people who don’t know better — that fibromyalgia is just CFS/ME with pain as a more prominent symptom. The confusion is understandable, but it needs to be crushed.

Let’s start by distinguishing ME and CFS. Although their acronyms are routinely paired (ME/CFS), that really pisses off a lot of experts and patients.26 They get confused because ME can cause severe chronic fatigue, but they are not the same thing. Myalgic encephalomyelitis is a disease, not a diagnosis of exclusion — a wastebasket diagnosis — like chronic fatigue syndrome and fibromyalgia are. And yet they have a long history of being lumped in together.

And myalgic encephalomyelitis isn’t fibromyalgia either, despite some similarities.

Fibromyalgia can be terrible, but ME is worse, even lethal.27 It’s a systemic neurological disease initiated by a viral infection; it occurs in epidemics and acts like an infection, while fibromyalgia does not. It causes measurable damage to brains, spinal cords, and organs, often disabling both mind and body. If all tests are normal — which is par for the course with fibromyalgia — it can’t be ME.

The similarities between the two illnesses are minimal & superficial at best but their differences are truly profound.

Jodi Bassett, “M.E. vs Fibromyalgia”

Fatigue is the shared symptom of both conditions that leads people to suspect that they might have ME instead of FM, or their FM might actually be ME. But while ME is notorious for causing fatigue, it doesn’t always do that. And there’s a crucial difference between the “tiredness” and “brain fog” of fibromyalgia and the cardinal, required symptom of ME, which is exercise intolerance that causes severe weakness and malaise. Most people with ME feel disabled by almost any activity, their brains suffer objective “neural consequences,”28 and exercise therapy infamously backfires.29 But many or most fibromyalgia patients actually benefit from exercise (more coming on this below, of course).

ME patients would love to be merely fatigued and bleary.

Some patients diagnosed with fibromyalgia and/or CFS are probably undiagnosed ME patients. However, most are probably suffering from chronic fatigue/pain with other causes (like myelopathy, as mentioned at the end of the last section).

To sum up:

  • Myalgic encephalomyelitis: a distinct neurological disease that causes severe exercise intolerance and, often, fatigue, pain, mental fog, and sleep disturbance as well (hence the confusion with fibromyalgia).
  • Chronic fatigue syndrome: a loose, lousy term with a lot of baggage, a wastebasket diagnosis, just a label for unexplained chronic fatigue with many possible causes, including some that overlap with possible causes of FM. While ME patients were once regularly tossed into the CFS wastebasket, that is now mostly history.
  • Fibromyalgia: “chronic pain syndrome,” another loose label for unexplained chronic pain with all the same kind of baggage as CFS, but with some stronger pathological themes (links to inflammation, spinal cord compression, etc). Nevertheless, it is probably a mixture of several problems — and ME isn’t one of the candidates.

Some sketchier theories about fibromyalgia

In this section, I’ll quickly dismiss several all-too popular ideas about what causes fibromyalgia:

  • repressed emotion
  • energy disturbance
  • adrenal fatigue
  • defective metabolism
  • infection and/or vaccination

If you want to see who disagrees and why, the rest of the internet is overflowing with people promoting these theories (and the exploitative cures based on them). But in my opinion this is a rogues gallery of terrible ideas that barely deserve a mention, let alone a serious discussion.

Can we blame infections and/or vaccinations? It’s particularly popular to point a finger at diseases like hepatitis C, Epstein-Barr virus, parvovirus, and — of course — Lyme disease. These are all probably red herrings, however: “There is no clear-cut evidence of fibromyalgia or chronic widespread pain due to infections or vaccinations, no correlations with persistent infection, and no proven relationship between infection, antimicrobial therapies and pain improvement.”30 I don’t think it’s possible to completely rule out infections — microorganisms keeping turning up where we didn’t expect them — but if fibromyalgia is related to an infection, it’s a completely mysterious one.

How about defective metabolismExcess phosphate? For many years, a common ingredient in cough syrups — guaifenesin, a chemical derived from a tree — has been prescribed as a natural treatment for fibromyalgia based on the idea that it purges an excess of phosphate, which allegedly accumulates due to [insert unclear metabolic defect]. That is what a skeptic would call an “extraordinary claim”: an overconfident explanation of a notoriously unexplained disease. The “guaifenesin protocol” is popular, but has very little expert support, even from alt-med friendly physicians, and was proven ineffective by its own proponents long ago,31 and fibromyalgia patients do not appear to have excess phosphate in the first place.32

Incidentally, guaifenesin is probably not even an effective cough syrup ingredient. •sad trombone•33However, it is actually a muscle relaxant as well, and maybe that explains why some fibromyalgia patients are pleased with its effects.

Adrenal fatigue probably does not exist,34 so it is unlikely to be the explanation for fibromyalgia, or a major component of it. AF is supposedly caused by chronic stress and “burnout” of the adrenal glands. For contrast, “adrenal insufficiency” is a real and serious disease with medical causes — just not stress. AF gets blamed for fibromyalgia because fatigue is the primary alleged symptom of AF, and also one of the primary symptoms of fibromyalgia. There could be a link relationship between stress and fibromyalgia, but it’s probably more subtle than burned out glands. There may be good reasons for fibromyalgia patients to reduce stress, but not because their adrenal glands are sputtering like a car low on gas. At best, it’s a simplistic guess about the effects of chronic stress that is currently at odds with the poor quality evidence but has a small chance of being vindicated someday. At worst, it’s dead wrong … and just happens to be a great way to sell books and false hope to fibromyalgia patients.

The answer to whether ‘adrenal fatigue’ or depletion exists or not may not be simple, but different answers can be offered according to the presence of an underlying disease. However, so far, there is no substantiation to show its existence.

~Cadegiani et al, 2016, BMC Endocrine Disorders

An “energy disturbance” is the culprit according to many alternative medicine practitioners. The same practitioners will blame almost anything on disturbed energy, but mysterious problems like fibromyalgia are singled out for special attention. As long as there’s no better explanation available, “energy” remains a contender that many will take seriously, god of the pathological gaps. It’s the basis for treatment with acupuncture above all, follow by aura massage: ritualistic movement of the hands through the space around you, a technique ironically called therapeutic “touch”. It’s all nonsense, debunked ad nauseum for decades now. Acupuncture is ineffective for all pain, never mind complex case of unexplained chronic pain.35 Therapeutic touch practitioners can’t even detect auras in blinded tests.36 All the benefits derived from energy therapies are easily attributed to the good (social) vibes and optimism we get from being cared for and being impressed by healing rituals, a psychological phenomenon.

Repressed emotions is a common variant of the idea that fibromyalgia is caused by stress. It’s not ridiculous to say that stress might be involved in fibromyalgia, but it is ridiculous to blame emotional repression specifically. For instance, “hypno-psychotherapist” Louise Levy attributes fibromyalgia to “suppressed and repressed emotions such as rage, anger, fear, worry, sadness, hurt etc” and boasts that she has “successfully treated many people … to full recovery [sic].”37 Psychiatrist debunker James C Coyne calls it “a pseudoscientific claim lacking in evidence or credibility” and “a throwback to discredited 1950s version of psychosomatic conditions.”38

Avoidance of psyschic conflict is a variant of the repressed emotions theory. That’s a distillation of the tortured logic of Dr. John Sarno’s explanation of fibromyalgia as a “musculoskeletal mind-body syndrome” in his 1998 book, The Mindbody Prescription. It’s pretentious psychoanalytic nonsense, full of huge self-serving leaps of logic — but also exceedingly popular, because it suggests that all that stands between you and a cure is a bit of soul-searching and a convenient attitude adjustment. His book sold well and influenced millions. By all means, search your soul, adjust your attitude — just don’t expect it to fix fibromyalgia.

Stress and fibromyalgia

Many people have suggested that chronic stress is an underlying cause of fibromyalgia, or even theunderlying cause. It’s important to note that no one has actually proved that stress causes fibromyalgia, but we do know that they are strongly linked and that severe stresses do often precede the disease. For instance, we know that post-traumatic stress disorder and childhood adversity are strong risk factors for developing chronic widespread pain.3940

If stress does cause fibromyalgia, no one knows exactly how it works, but there’s no shortage of possibilities. Some of the ideas already discussed above may simply be a smaller part of this bigger picture. For instance, inflammation may simply be a mechanism by which stress causes trouble.

Theories about how fibromyalgia might be caused by stress range from simplistic crankery like kacked out adrenal glands and repressed emotions on the one hand (both discussed above), to cautious and advanced speculation on the other. The best example of the latter that I know of comes from a 2011 paper by Pamela Lyon, Milton Cohen, and John Quintner,41 summarized in a fairly readable post on FMPerplex.com, “Evolution, Stress and Fibromyalgia.” (Heavy reading, but short and worthwhile.) They suggest that fibromyalgia strongly resembles “sickness behaviour” displayed widely in the animal kingdom, whenever a critter is struggling to adapt biologically to threats and stresses:

When a stress response is prolonged in any organism, for whatever reason, profound changes occur in functioning and behaviour. Chronic SR activation in humans is associated with some of the most medically important diseases in the developed world, including cardio-vascular disease, type 2 diabetes, and metabolic syndrome. … FMS can be seen as a clinical outcome of prolonged activation, or dysregulation of a complex, evolutionarily conserved system designed to defend the organism against threat.

The big question with stress is whether or not it has measurable biological consequences that can lead to fibromyalgia. It’s not as straightforward as it seems. It seems like a bit of a no-brainer, an easy extrapolation from things like ulcers and heart attacks that are notoriously stress-triggered. But a 2015 study of 2000 Dutch citizens over six years “could not confirm” any biological consequences.42 Their data did affirm the link between having a rough time in life and chronic pain — people who struggle emotionally are definitely at risk of starting to hurt more — but this occurs independently of any obvious, measurable biological changes.

If stress isn’t not biologically toxic, then why the link? The alternative is that stress puts the “psycho” in psychosomatic illness.

Hypochondria, psychosomatic illness, and the all-in-your-head problem

Hypochondria is medical anxiety, a phobia of pathology. While fear and hypervigilance may erode quality of life, the pure hypochondriac is not suffering from a medical problem — not yet anyway. It’s a mental illness.

Of course, you’re not paranoid if they’re really after you, and we can learn fear of disease from disease. Or, if you were hypochondriac to begin with, the disease is like gasoline on that fire.

Importantly, many people with fibromyalgia have no obvious fear of pathology. They are not hypochondriacs by definition. They may be appropriately anxious about their health problems, of course, but that’s not hypochondria. Repeat: being worried about medically unexplained symptoms is not hypochondria.

But it is also possible for the mind to create symptoms without obvious anxiety. Psychosomatic illness is a real phenomenon, in which subjective suffering — actual symptoms — become acute or prolonged in the absence of pathology or anxiety. We know this can happen from extreme examples. It is possible for the mind to produce impressively severe symptoms and disabilities that definitely do not have a biological mechanism. Conversion disorders are real: people can go blind when there is nothing wrong with their eyes, have seizures without abnormal brain activity, or suffer paralysis with intact nerves. Neurologist Dr. Suzanne O’Sullivan describes some excellent examples in this fascinating short lecture:

If such horrors are possible, then surely it is not only possible but downright common for people to make themselves sore all over and weary to the point of disaster.

But that doesn’t confirm that fibromyalgia is a psychogenic illness. It only means it’s possible. Only a incurious, ignorant jerk would think it’s the only possibility.

And so apparently lots of healthcare professionals are uncurious, ignorant jerks. The words “all in your head” have become notorious because so many physicians are much too quick to assume that fibromyalgia is hypochondriac/psychosomatic in the absence of any other convenient explanation. The words have become a symbol for a lack of medical empathy, humility, and imagination. It’s not so much the psychosomatic diagnosis itself that bothers people with fibromyalgia, it’s the dismissal, the practical effect, the suffocation of further investigation that crushes the hope of identifying a pathology that can be treated.

Of course, few doctors actually say “all in your head” these days. They know better, and even go out of their way to say the opposite, but it’s like they are crossing their fingers behind their back when they say it. Most are still thinking, “Definitely psychosomatic.” They’re just dancing around it diplomatically.

Many fibromyalgia patients realize that it’s possible that their symptoms are psychosomatic, and many of them actively work on treating it as if it is, as best they can, in the hopes that they will get better that way. But they don’t want the conversation to end there. They hope for another diagnosis, a less murky one. They want to make sure there’s nothing more serious brewing, and that’s completely reasonable.

No one knows if all or some fibromyalgia is caused by the mind and/or disease or even more than one disease. It’s all plausible. Dismissively chalking someone’s pain up to a mind game is totally un-cool, because that person absolutely could have an undiagnosed or even unknown pathology.

But patients also must embrace the possibility of psychosomatic illness. And they must recognize that even a doctor who embraces the possibility of pathology may still be helpless to find one …

Introduction to Treatment

Obviously there’s no proven treatment for fibromyalgia. As mentioned in the introduction, Thieme et alstudied four sets of professional treatment guidelines and found that they were … all over the map.43While “there were a number of similarities” in their recommendations, there were also maaaaanyinconsistencies. The only treatments with strong agreement were:

  • exercise
  • cognitive behavioural therapy
  • the old-school anti-depressant drug amitryptiline

And just because they agreed on these does not necessarily mean that they actually work, or work for everyone. It just means that all four organizations concluded that they might be, perhaps, slightly better than nothing, for at least some people.

Only one treatment was panned by all four guidelines: opioids. No surprise there.

And they were collectively equivocal or blatantly contradictory on dozens of others. For instance, one group strongly recommends against massage therapy, another recommends it (moderately), a third is weakly against it, and the fourth had no comment! So I guess that one’s still a little uncertain.

Happily, there was only one example of a treatment that had strong recommendations both for andagainst (the drug milnacipran). Although there were many contradictions, they were mostly not “strong” ones, so at least there’s that!

Just one guideline seemed to go out of its way to make recommendations against a long list of particularly silly treatment options, like relaxation, dance therapy, magnets, lasers and TENS, cryotherapy, local anaesthetic, and several more.

For the rest of the article, I will discuss some highlights from treatment options in as practical a way as possible. This article does not yet provide a comprehensive tour of the options, but it does cover most of the more practical and interesting possibilities.

Fibromyalgia and your rheumatologist or neurologist

Fibromyalgia often resembles the early stages of rheumatological diseases like lupus or ankylosing spondylitis. Indeed, fibromyalgia may co-exist 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.

Other relevant medical specialities

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 focusing on surgical repairs of (allegedly) biomechanical problems, and sports medicine. They are mostly not a good choice for fibromyalgia patients.

Physical medicine & rehabilitation (AKA physiatry) is one of the newest medical specialities, and PM&R docs 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 of altering the progression of fibromyalgia, but they can offer something almost no other professional can: at least some temporary but meaningful symptom relief, and soothing of the nervous system. Nervous system soothing may be more valuable than it sounds, more than just relaxation, insofar as a very pleasant sensory experience may actually reduce sensitization.

Exercise for fibromyalgia

All physiotherapists have experienced the anxious expression, the dejected look, the frustrated frown of the individual living with persistent musculoskeletal pain who is asked to partake in exercise.

~ Reasoning exercise dosage for people with persistent pain, by Paul Lagerman, 30–35

Regular moderate exercise you enjoy is good medicine for fibromyalgia.44454647

Maybe.48

Although exercise is famously “the closest thing there is to a miracle cure” for many medical problems,4950 it’s much less of a slam dunk for chronic pain in general,51 and clearly it can backfire and actually cause pain,52 especially in fibromyalgia patients. Indeed, feeling like you can’t exercise — because it’s painful, because it wipes you out — is one of the signature features of fibromyalgia!

Any advice given for myalgic encephalomyelitis — also known (incorrectly) as chronic fatigue syndrome — is often given for fibromyalgia as well.53 And so these waters have been muddied by the infamous “PACE” trial, a big British experiment which concluded that graded exercise therapy — taking baby steps back to normal exercise levels — was helpful for myalgic encephalomyelitis patients. Their results also implied that ME patients aren’t actually sick and just need to think positively and get moving. But the PACE trial has been tainted by scandal and harshly criticized as “uninterpretable.”5455 Unfortunately, there are good reasons to believe that PACE got it disastrously wrong, and exercise actually hurts ME patients56 — none of which would have anything to do with fibromyalgia but for the constant clumsy conflation of the two conditions. Here’s the one useful nugget we can take from PACE-gate: if you supposedly have fibromyalgia, but you have a particularly hard time recovering from exercise, it might worth trying to rule out ME.

Or it’s possible that exercise just really does aggravate some cases of fibromyalgia.

And yet fibromyalgia is among the most likely of chronic pain conditions to benefit from exercise if you do it right. But what’s right? No one knows for sure, of course, but here are some evidence-inspired tips:57

  • Moderation, of course: either stick to the Goldlilocks zone, or only leave it for relatively short bursts. Dosage is everything. The conventional wisdom is regular moderate exercise, never too much or too little, but I think that’s a bit too simplistic. You may want to exercise intensely because it’s fun, for instance, but that must be balanced with more frequent and generous recovery opportunities than you needed back in the pre-fibromyalgia days.
  • Measure ooginess, not pain. Don’t judge how much is too much based only on pain. Rate your readiness much more generally instead: use “subjective units of distress.,” or the “ooginess” scale (rather than a pain scale). Basically the idea here is that the real problem is much more complicated than pain, and so pain alone is an unreliable signal. On many days, pain and ooginess will go together. But not always, and by reckoning it this way you might choose to push a bit even when you are in pain but otherwise feel pretty decent … or you might ease up and skip a day even if the pain is low but the ooginess factor is fairly high.58 Avoiding fixation on the pain, pain, pain has other benefits too.
  • Timing is everything: as every fibromyalgia patient knows, there are good days and bad days. It’s important to minimize exercise on the bad days, and equally important not to pounceon the opportunity to get back to it on the good days.5960 Again, judge the goodness and badness of days in a general way, not just the pain.
  • Aerobic or lifting weights? It doesn’t really matter — they both seem to work.6162 Do what pleases you …
  • Make it fun, make it happy. That may sound trite, but exercise may work for fibromyalgia not because of its familiar biological effects, but as a desensitization tool, a brain-changer,63 a way to demonstrate to nervous systems that the world is a “safe and good place.”64 This effect would also go a long way to explaining why one form of exercise seems to work well for one patient, and not at all for another: because its success depends at least partly on how we feelabout a workout. For instance, there’s evidence that taiji is helpful65… but I bet it depends on how you feel about taiji!66

Treating spinal cord pinching

If positional cervical cord compression (PC3) is actually a cause of fibromyalgia, it begs the question:67what on Earth do you do about something like that? Not much. You try to “work around it” — avoid the positions that cause trouble. Which isn’t great.

Note that no one really has any idea how to treat myelopathy without surgery. “You know nothing, Science.” A 2013 review of dozens of papers found exactly no reliable evidence of anything, a big fat nothing burger.68

Or you operate. Which is always a last resort, but especially this delicate surgery.

Keep a stiff neck

Dr. Holman (the researcher most associated with this topic) provides a DVD that is basically a tutorial for physical therapists to help patients stand up straight — just classic “good posture”! He believes that a majority of patients would recover with this “PT protocol.” That seems a bit trite to me, weirdly simplistic and a bit disappointing. (And why do you need a video tutorial for it? Seems like overkill!) On on the other hand, we are talking about about “positional” spinal cord compression here, so maybe avoiding the position that compresses your spinal cord is just sensible, probably better than nothing, maybe a lotbetter than nothing … and that does basically boil down to trying to maintain a more erect posture. Permanently being shy of neck flexion and/or extension sounds terrible, but it’s certainly the lesser of evils, if those positions actually are irritating your spinal cord and that is in, in turn, ruining your life. And you wouldn’t be alone: there are other conditions that definitely require diligent avoidance of certain neck positions.69

At the same time, I can’t really take this advice seriously as a “treatment protocol” either: it’s just avoiding aggravation. Or maybe I should say it’s “just” avoiding aggravation — basic but not trivial?

Trying to make room for your spinal cord surgically

Trying to fix spinal cord compression, constant or intermittent, is a risky long shot. But the stakes are high, and people try, and sometimes it works out. Depending on the specific mechanical cause of compression, it might be a better gamble. So, how do you decide when it’s time to talk to a surgeon about it? How do you know if you should ever take that gamble? I think three conditions would have to be met:

  • The clinical picture is desperate: years of disabling symptoms! Nothing less dire is worth the risk of this kind of surgery.
  • A high level of diagnostic confidence, based mainly on the elimination of other diagnoses and a clear self-knowledge that neck position is relevant to your symptoms. Other signs of spinal cord compression (myelopathy) would obviously also clinch the diagnosis.70 And there’s one other diagnostic factor stands out …
  • Imaging evidence of obvious stenosis/PC3. Not mild! Lots of people have mild stenosis as they age — that alone would definitely not be enough.

Having high diagnostic confidence is the tricky one, and not many people are going to be able to tick all three of those boxes. But we can easily imagine a patient who is desperate,has done a thorough job eliminating other diagnoses and confirming this one (e.g. successful provocation tests, a history of feeling better when flexion is avoided, etc), and has imaging evidence of substantial stenosis. It does make sense for that patient to at least consult a surgeon about this.

Other treatment advice for fibromyalgia

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. It won’t be easy, and it won’t work. But the only thing worse than the sleep problems associated with fibromyalgia is those same sleep problems aggravated by potentially fixable problems light and noise pollution, uncomfortable beds, and behavioural factors like logging on to Facebook one last time before bedtime. See The Insomnia Guide.

Treat the treatable. Fibromyalgia patients have other medical problems, like tendinitis,71 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.

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 assertively seek out a 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 practicesmay be appealing and appropriate for some people.

Experiment with anti-inflammatory dieting. Although there is clear evidence that fibromyalgia is inflammatory,72 there is none that any kind of diet is likely help. And yet an anti-inflammatory diet is basically just a “heart healthy” diet — so low stakes, worth a shot, with a worst case scenario that you’re eating healthier in general. For some more detailed recommendations, 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.

Try marijuana. 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.

Hang out in a pressure chamber? Hyperbaric oxygen therapy for fibromyalgia

Hyperbaric oxygen therapy (HBOT) involves sitting in a pressurized chamber with an oxygen-rich atmosphere. The idea is that it squeeeezes extra O₂ into your body! It’s an experimental, expensive treatment with some promising preliminary evidence for some conditions, like autism and migraine. The risks are unknown, but probably minimal.

Predictably, there’s not much evidence on this topic, and what we have is of questionable value (see above, “An avalanche of useless fibromyalgia research”). As of 2017, there are a couple dozen slightly encouraging animal and human trials of HBOT for “chronic pain” in general,73 and just one more intriguing scientific study of HBOT for fibromyalgia in particular,74 with a conclusion that sounds fabulous:

CONCLUSIONS: The study provides evidence that HBOT can improve the symptoms and life quality of FMS patients. Moreover, it shows that HBOT can induce neuroplasticity and significantly rectify abnormal brain activity in pain related areas of FMS patients.

It’s a substantial speculative leap from “HBOT facilitates neuroplasticity maybe possibly” all the way to “and therefore fibromyalgia cure!”

Unfortunately, we have no strong reason think that HBOT is going to be an effective treatment for fibromyalgia specifically. It’s not a crazy idea, but it’s still a substantial speculative leap from “HBOT facilitates neuroplasticity maybe possibly” all the way to “and therefore fibromyalgia cure!” The whole thing smacks of wishful thinking and perhaps even self-promotion (which is a bit of a plague on HBOT research). Although bias is normal, and nothing actually gets studied if people aren’t keen on it, this is a complex study with a high-risk of bias. These researchers are obviously heavily invested in the idea of HBOT, and the more complicated the study, the more ways there are to unconsciously distort the experiment and its results.

The inclusion of SPECT assessment, while fascinating, adds a bunch more complexity to what is already a complicated trial. Although well-written with good, thorough disclosure of some of the obvious limitations (like the problematic absence of a true placebo control), there’s still way too much wiggle room here, and the results are essentially meaningless without good replication… and probably an (impossible?) solution to the placebo problem. Although the authors think the results were “not likely to be a placebo” and cite a couple reasons why — like the fact that patients actually worsened initially — by no means is that doubt fully resolved.

But there is a bright side: the final results did seem to be quite robust, and they shouldn’t be carelessly dismissed. I just can’t take it too seriously without replication. But watch this space. I wouldn’t have bothered including an HBOT section if I didn’t think there was some potential.


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