Fibromyalgia – What’s in a Name?

10 minute read

Fibromyalgia management can be improved by adopting a different perspective The great and enigmatic philosopher Ludwig Wittgenstein had just turned 30 when, in 1920, he left Cambridge, where he had been working with Bertrand Russell. He returned to Austria to work as an elementary school teacher in the obscure rural village of Trachtenburg, certain that […]

Fibromyalgia management can be improved by adopting a different perspective

The great and enigmatic philosopher Ludwig Wittgenstein had just turned 30 when, in 1920, he left Cambridge, where he had been working with Bertrand Russell.

He returned to Austria to work as an elementary school teacher in the obscure rural village of Trachtenburg, certain that he had solved Western philosophy’s most difficult and enduring problems.

In his seminal “Tractatus Logico-Philosophicus”, Wittgenstein had codified his ‘picture theory’ of language, essentially demonstrating that all words could be mapped directly onto concrete concepts in the world, and therefore mathematical principles of logic could be applied to all philosophical problems. All problems that couldn’t be considered in this way were not worthy of further philosophical discussion. This led to the famous final sentence of the Tractatus: “Whereof one cannot speak, thereof one must remain silent” (which, incidentally, is a favourite intonation of mine during feedback to physician trainees after long case presentations).

Ultimately, the greatest critic of Wittgenstein’s central thesis – that language has a fixed and predictable relationship with the world – turned out to be Wittgenstein himself.

After nine years of quiet obscurity and asceticism (he gave away all the vast fortune he had inherited), he unexpectedly returned to academia to declare that he had been quite wrong. His later years were spent back at Cambridge, lecturing to a select group of precocious students (including Alan Turing) and painstakingly developing the ideas that were collected into his posthumous masterpiece, “Philosophical Investigations”.

Key among the many insights in his later work was the idea that the meanings and uses of words are shaped by the social interactions in which they are used, or what he termed ‘language-games’. That is, a word need not map directly and unchangeably onto an object or concept, but instead has a meaning that is understood by its users, in a specific context. These meanings may be different but overlapping, possessing what Wittgenstein termed ‘family resemblances’.

Why, you may ask, should we be interested in the life and thoughts of a niche early 20th century Austrian philosopher?

Partly because the biographical details of his life are fascinating – here is just a taste: his family was not only immensely wealthy but also of remarkable cultural influence in pre-war Viennese society: his eldest brother Hans was a musical prodigy often compared to Mozart who ran away to America as a young man and soon drowned himself, the first of three of Wittgenstein’s brothers to commit suicide. Another brother, Paul, having lost an arm in World War I, famously had piano concerti for the left hand composed for him by Ravel, Prokofiev and Strauss. When Wittgenstein’s sister Gretl married into a wealthy American family, her wedding portrait was painted by Gustav Klimt; her husband also committed suicide. None of which might have happened if Karl Wittgenstein, the patriarch, had not been forced to return to the Austrian steel trade from a brief sojourn in the US as a violinist in a minstrel band following the assassination of Abraham Lincoln, which led to a ban on musical performances.

More importantly, Wittgenstein and his language-games allow us a method for tackling one of the big problems we face in managing fibromyalgia, one I term the ‘naming problem’.

Fibromyalgia has been plagued by arguments over its name for hundreds of years.

The term fibromyalgia was introduced to our lexicon in 1976 by Philip K Hench (the son of the Nobel prize-winning father of cortisone, Philip S Hench), replacing fibrositis, the scourge of Bradman and countless others throughout the war-ravaged first half of the 20th century.

Before that, many other terms, including neurasthenia and muscular rheumatism, presumably described a similar syndrome. While fibromyalgia is now firmly (and seemingly irreversibly) entrenched in our nosology, its use remains controversial. It is no coincidence that the most hackneyed pun in presentations by fibromyalgia specialists is to refer to it as
‘the F-word’.

The primary argument against the use of the term has been the mental bootstrapping required to bring it into existence – a form of circular reasoning that argues that fibromyalgia may be diagnosed in patients who have symptoms consistent with fibromyalgia . This is, of course, an argument that is difficult to refute.

Investigation of the central nervous system of the patient with chronic widespread musculoskeletal pain will never find a lesion or brain state that can be said to be fibromyalgia. If the pathology cannot be shown to exist, how then can we give it a name and call it a disease?

The experience of the symptoms of fibromyalgia (including pain, fatigue, mood disturbance, and many others) cannot be measured at the molecular or cellular level. However, this does not invalidate the symptoms or the construct. The symptoms of fibromyalgia are an emergent property of nested complex systems (a central nervous system, embodied in a human, embedded in a social environment) and are therefore resistant to a reductionist scientific understanding. In other words, humans are not simple machines.

I want to say here that it can never be our job to reduce anything to anything, or to explain anything. Philosophy really is “purely descriptive”.

Wittgenstein, The Blue Book

But Wittgenstein may help us find a way out of this endless loop. If we can accept that the word fibromyalgia does not necessarily map onto a specific object in the patient (such as a particular disorder of the peripheral nociceptors for example), and instead understand that by using the word we invoke a language-game, then it becomes easier to make peace with our terminology.

‘Our mistake is to look for an explanation where we ought to look at what happens as a proto-phenomenon. That is, where we ought to have said: this language-game is played’

Wittgenstein, Philosophical Investigations

The key is to recognise that the word fibromyalgia is a description of the patient’s symptom experience, not an explanation for it.

My long-suffering registrars, I hope, have the mantra  “description not explanation” ringing in their ears. Fibromyalgia describes a particular set of symptoms but contains no causal valence. That is, my patient’s musculoskeletal pain is not “due to” their fibromyalgia. Rather, I use the word fibromyalgia to describe their pain experience. The total symptom set in fibromyalgia (widespread pain, allodynia, fatigue, sleep disturbance, altered mood) is easily recognised by the rheumatologist, is common in humans (across cultures) and presumably reflects one end of a spectrum of an evolved stress response that is ubiquitous .

As someone who appears to be fortunate enought to exist at the other end of the spectrum of fibromyalgianess (in itself a highly useful, if profoundly unlovely, new word), I had my first experience of severe widespread allodynia last year during an episode of influenza B and I can tell you it was far more unpleasant than I had imagined.

We must do away with all explanation and description alone must take its place.

Wittgenstein, Philosophical Investigations

Why is this important?

Because names are important. Without a name, an illness cannot be said to exist.

So, to the sufferer (and the doctor, the family, the employer), an illness experience without a label, is one that does not exist and therefore must be a product of the imagination or a flawed character or, worse, the malingerer.

The lack of a diagnostic test or agreed pathophysiological substrate for fibromyalgia lies at the heart of the enduring controversy over this condition and other syndromes characterised by pain without a demonstrable lesion.

But a diagnostic label need not map directly onto a specific pathophysiological entity for it to have meaning: Wittgenstein reminds us that the word fibromyalgia is given its meaning (and therefore its utility) by its use in the clinic and within the profession. Indeed, the therapeutic use of the term fibromyalgia in the clinic does not even require the practitioner to accept it as a distinct clinical entity.

“Trying to explain it will only exhaust you.

It is better to hold onto a paradox”

Tao Te Ching, Chapter 5

Managing fibromyalgia in daily clinical practice is often difficult, unglamourous work. Indeed, fibromyalgia has been shown to occupy the bottom rung of a hierarchy of ‘disease prestige’. Therefore, it can be of great benefit for both the clinician and the patient to have a robust and functional mental model of what it is that we are actually managing.

The answer is that we are managing a whole person who experiences a set of symptoms that we recognise (and name) as fibromyalgia. The act of naming in itself can be therapeutic. And by invoking the name fibromyalgia, we enter into a language-game with our patient – a process of creating shared meaning that, if done well, promotes genuine shared decision-making in the clinic.

This process of co-creation of a conception of the illness and its management can be a valuable method for tackling this difficult condition from a ‘top-down’ whole-of-person approach rather than the ‘bottom-up’ molecular target-driven approach that has been so effective in treating the inflammatory diseases and, so far, so disappointing in treating chronic pain.

Not only can this be valuable in the management of the symptoms themselves, but active engagement in this language-game can help to protect the patient against many of the potential harms that stalk the patient with persistent pain, including atomisation of the various symptoms into innumerable separate diagnoses, over-investigation, and the many other practitioners eagerly promoting alternative [and often expensive] therapies.

“Treat every patient as an individual enigma”


Furthermore, this conceptual model can also help the practitioner in the inflammatory disease clinic. In daily clinical practice, fibromyalgia frequently hides in plain sight.

We increasingly recognise the prevalence and impact of persistent pain in rheumatology patients. We found that up to a quarter of patients in a treat-to-target early arthritis clinic experienced a ‘discordant’ treatment response, in which the inflammatory markers and swollen joint counts normalised, but pain and tenderness persisted. Whether or not these patients meet diagnostic criteria for fibromyalgia is irrelevant at the individual patient level but, if we are to believe Wittgenstein, it may be very helpful to use the conceptual model of fibromyalgia to help describe (rather than explain) this set of persisent, disabling symptoms.

Wittgenstein’s philosophy can be of great value in expressing some of the ineffable challenges that we face in the rheumatology clinic.

Throughout his life he had a deep affection for the medical profession and at times considered studying medicine in order to become a psychiatrist.

The relationship between medicine and philosophy has existed for centuries, and is still a valuable tool to help make us better doctors.

This relationship was exemplified at the end of Wittgenstein’s life: in 1951, gravely ill with prostate cancer and having expressed a wish not to die in a hospital, Wittgenstein was invited to move into the family home of his doctor, Edward Bevan, where he spent his final days surrounded by friends.

Dr Samuel L Whittle is a Rheumatologist from The Queen Elizabeth Hospital, Woodville South, South Australia

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