Mamushka has lived through more than any living person could or should be asked to endure in one life. Her losses were not singular but serial, each one arriving before the last had settled, across decades that offered her very little reprieve.
After the fog of trauma had lifted with the passage of time, an unnamable pain remained, and a diagnosis of fibromyalgia…
A diagnosis that means, in practice, that the pain is real, the suffering is real, the exhaustion is real, and none of it leaves a trace that a scanner can read.
For a long time this was treated as a problem with the patient.
It is, I argue, a problem with the scanner.
Mamushka found her own way. Not through the pharmacology that had offered her little, but through a practice called sophrologie, largely unknown outside France and the French-speaking world, where it is used routinely in pain clinics, oncology wards, and maternity hospitals.
She could not have explained, in biomedical terms, why it helped. But her body knew something that the diagnostic categories had not yet found the language for.
This article is my attempt to find that language.
The invisible condition and its gendered history
Fibromyalgia affects roughly four percent of the general population. Approximately eighty percent of those diagnosed are women. This disproportion is not a mystery of biology. It is partly a consequence of history.
For most of the history of medicine, women who reported widespread pain without visible tissue damage were diagnosed with hysteria. The word derives from the Greek for uterus. The assumption embedded in it, that certain kinds of suffering were products of female biology rather than real pathology, persisted in various forms well into the twentieth century.
The diagnostic category of fibromyalgia was only formally recognised in 1990. Many clinicians still treat it with scepticism.
What has changed is the imaging. Neuroimaging studies now document white matter changes in fibromyalgia patients, particularly in regions involved in descending pain modulation, the pathways that normally regulate the intensity of pain signals before they reach conscious awareness. There is also evidence of small fibre neuropathy in a significant proportion of patients, actual structural changes to the thinly myelinated and unmyelinated peripheral fibres that carry pain and temperature signals.
The condition is not imagined. It is written in the white matter. The scanner was simply not looking in the right place.
Central sensitisation and the chiasm
The neurological account of fibromyalgia centres on a concept called central sensitisation. The pain processing system has become sensitised, amplifying signals that would not normally register as painful, maintaining pain states long after their original triggers have resolved. The nervous system is running at a higher gain than the situation requires.
This is an accurate description of what happens. It does not explain why…
The Myelin Mind offers a more grounded account, rooted not in the signal but in the condition the signal meets.
The chiasm is the ongoing encounter between the incoming signal and the accumulated myelinated condition. Experience is not produced by the signal alone. It arises where the signal meets the structure that has been built, layer by layer, through a lifetime of encounter with the world. The quality of that experience depends on the relationship between what is arriving now and everything that has been inscribed before.
In fibromyalgia, the accumulated condition has been shaped by experiences that required the nervous system to treat signals with urgency. Serial loss, chronic threat, a life in which the body learned through genuine necessity that incoming signals demanded immediate and sustained attention. The myelinated condition was built around that necessity. The chiasm was calibrated to it.
This is not a malfunction. It is the accumulated condition doing what it was shaped to do.
The tragedy is that it continues doing so long after the circumstances that shaped it have changed, or long after the body has exhausted its capacity to sustain the state those circumstances required.
Every incoming signal now meets a condition primed for amplification. The encounter cannot settle. The resonance persists. What medicine calls central sensitisation is, through the Myelin Mind lens, a chiasm that has been inscribed toward vigilance and cannot easily find its way back to ease.
This is why the pain is real. It is not a signal amplified by imagination. It is a real signal meeting a real accumulated condition, producing a real experience. The chiasm is functioning. The problem is the structure it is functioning within.
Why pharmacology reaches its limits
Most pharmacological approaches to fibromyalgia address the signal. They attempt to reduce pain transmission, to quiet the gain, to interrupt the amplification at the level of neurotransmission.
Some of this helps some people some of the time. But it addresses the incoming side of the chiasm while leaving the accumulated condition untouched. The structure that the signal meets remains calibrated for urgency. Quieting the signal without reshaping the structure is, at best, partial relief.
Changing the accumulated myelinated condition is slow, metabolically expensive, and cannot be accomplished by intervention from the outside alone. Myelin is built through encounter, through the lived experience of the body in a world that gradually, incrementally, comes to feel different. It requires repetition, rest, and time. It cannot be administered.
Sophrologie and the lived body
Alfonso Caycedo was a Colombian-Spanish psychiatrist working in Paris in the 1960s when he developed what he called sophrologie. The name derives from Greek: sos, meaning harmony or serenity, phren, meaning mind or consciousness, and logos, the study of. Caycedo read Husserl. He understood that consciousness is always consciousness of something, that the body is not an object the mind inhabits but a lived situation the person is, and that therapeutic work at the level of that situation required a different approach from the prevailing clinical models.
Sophrologie is a systematic practice of phenomenological attention to the body as it is lived from the inside, working with breathing, progressive relaxation, and directed awareness to cultivate a relationship with bodily experience that is neither suppression nor amplification but something closer to honest habitation.
It is mainstream in France. Pain clinics use it. Oncology wards use it. Maternity hospitals use it.
Through the Myelin Mind lens, sophrologie works at the level of the accumulated condition rather than the signal. It does not attempt to block pain transmission. It attempts to slowly, patiently, incrementally reshape the ground that pain signals meet. The practice of attending to the body with neither urgency nor avoidance, returning again and again to the experience of inhabiting a body without the interpretation layer of threat, is a practice of offering the accumulated myelinated condition different material to incorporate.
This is not a quick process. It is not a cure. But it works at the right level of the problem.
Caycedo did not have the Myelin Mind vocabulary. He knew, without being able to say it in these terms, that the condition the signal meets is what determines the quality of experience, and that reshaping that condition requires working from within it rather than acting on it from outside.
What I see from the other side of the world
I live in Australia. Mamushka lives in France. Most mornings she does not rise until late. Her body requires it.
When I have the joy of visiting her, even through her happiness in seeing me, I notice a trembling, a quiet internal movement that she carries without drama, because she has been carrying things without drama for a very long time.
There are also periods, sometimes stretching to six months, when the suffering recedes. Not resolution. Not cure. Something more like a clearing in the weather, the accumulated condition finding, temporarily, a configuration it can sustain without the constant amplification that exhausts everything. These periods are real and they matter, even if they do not last.
I do not know where she is with it today. The Myelin Mind account does not offer a trajectory of certain improvement. It offers a framework for understanding what is happening and why the conventional approaches have their limits, and why the work she has found for herself, the patient phenomenological attention of sophrologie, is working at the right level even when it is working slowly.
The body keeps the ledger. Every loss, every sustained period of genuine necessity has been inscribed in the white matter, calibrating the chiasm toward the urgency that the situation required. That inscription does not dissolve when the situation changes. It persists, doing what it was shaped to do, in a body that has not yet found its way to a different accumulated ground.
This is not a failure of the body. It is the body being faithful to its own history.
The work of sophrologie, and of any practice that attends honestly to the lived body over time, is not to erase that history. It is to add to it. To offer the accumulated condition new encounters, new experiences of a body that can also be a place of ease. To build, slowly, an accumulated condition spacious enough that the incoming signal can meet something other than amplification.
This is slow but real work – but it is And it is the right work.
I wrote this for you Mamushka.
I know only you will understand this and in writing this I hope that you will understand me too. You have taught me about sophrologie and in turn you will now understand sophrologie as a little part of the myelin mind.
Jack Parry is a philosopher, polyglot and biomedical animator at Swinburne University of Technology. He is the author of The Myelin Mind: The Genesis of Meaning.