Fibromyalgia, Exploding Head Circuitry and The Problem with the term ‘Heart Sink patients’


Otherwise referred to as Fibro or ‘The Invisible Illness’ in chronic communities, Fibromyalgia is a chronic hypersensitivity disorder characterised by generalized and intense musculoskeletal pain, accompanied by intermittent periods of fatigue and cognitive impairment (i.e. loss of concentration and memory loss) known as ‘fibro fog’. Often initially masked by other conditions such as rheumatoid arthritis or lupus, fibromyalgia is said to impact up to 5 million americans, with an increased presence in women over men( a ratio of respectively 6:1).

So, that’s all well and good, but what's the big deal with fibromyalgia? and why should we pay any particular attention?
Well, though controversy begins at its unidentified cause, the medical debate reaches its peak once these conclusions impact the ethical behaviour of certain practitioners. So, without further ado, here’s a case study on Fibromyalgia, how it affects the patient to practitioner relationship and why even doctors get things seriously wrong ( AKA advances in our understanding of Fibromyalgia's pathology.)

The Dominant Belief Concerning Fibromyalgia’s Origins
So, you’re probably wondering, what is all this palaver around the cause of fibromyalgia?
The answer? Well, In short, we’ve never been completely sure what it is. Part of Fibromyalgia's infamy originates from its undeciphered classification. Known to bounce between the boundaries of medical and psychological fields, a lack of known biological cause or objective symptoms has lead to the conclusion that Fibromyalgia has a solely psychological origin.
To be more specific, Fibromyalgia has been historically classified as a psychosomatic, or somatic symptom, disorder. This is a condition wherein physical symptoms are manifested due to psychological factors.

The Psychosomatic Hypothesis’ popularity is understandable. Its foundation stands on multiple studies that confirm the dominance of various psychological factors in relation to fibromyalgia. For example, one study revealed a disproportionately high frequency of Fibromyalgia sufferers have experienced severe physical trauma during their childhood. Furthermore, other research (specifically that of R.H Gracely and colleagues) has identified a strong correlation between pain catastrophization( the characterization of pain as unbearable and awful) and an increased neurological response in regions of the brain responsible for pain perception. It’s also important to consider the well-documented correlation between stress and the severity of Fibromyalgia’s symptoms (though such a relationship is not unheard of with other chronic diseases).

However, all things considered, it is undeniable that our understanding is severely limited; the lack of specific effective or standardised cure is a testimony to this. Current treatments for Fibromyalgia go range from non-convulsives or other non-specific medications; to alternative medicines such as medical marijuana; all the way to behavioural therapy, given not to prevent the condition but in the hopes of teaching patients to more easily live with it.

So...
The absence of a biological cause or cure, combined with Fibromyalgia’s invisible nature and complex treatment, often results in fibromyalgia sufferers repeatedly returning to their clinicians with no improvements. It’s a fatiguing condition to live with and a pedantic disorder to treat. Tensions frequently build between doctors and their patients, of whom many are doomed to later gain the label of ‘Heart sink patients’.

What are Heart sink patients?
The phrase ‘Heart sink’ describes individuals perceived by medical attendants as having an unnecessarily distressing or obstructive impact on medical practice. Unfortunately, this has historically lead to a raised likelihood of patient neglect. It’s a scenario notoriously associated to psychosomatic disorders, which are often treated by some as a disease of delusion and consequently a nuisance to be avoided in a clinic. After all somatic symptom disorders concern psychiatrists; to a rheumatologist, if anything, fibromyalgia could be closer to a dangerous obstruction to proper diagnosis.

Consequently, some, but definitely not all, doctors have been known to exert insufficient efforts- with many in the fibro community learning to resent clinicians for unknowingly aggravating their condition. By putting sufferers under the label of ‘Heart Sink’ patient, doctors may unconsciously risk putting the patient under the stress of social isolation, and perhaps even humiliation, which could ultimately culminate in a debilitating negative feedback loop of a worsening condition.

In such situations, it’s natural to question: should  ‘Heart Sink Patients’ be the phrase? Or should it be ‘Heart Sink Practitioners’?
The most ironic part is, though undeniably intelligent, doctors in particular, should never assume they have all the answers; Fibromyalgia is evidence of this.

What Do The Breakthroughs Say?
Nowadays the tables have turned for fibromyalgia. Study upon study have shown a somatic and biological basis for the condition, allowing it to move out of the category of psychosomatic and officially enter into a bio-psycho-social context. Traumatic physical or psychological events are now recognised in conjunction with an increasing number of rational biological factors.

From genetic predisposition, to a surplus in sensory nerve receptors, to an exploding head (roughly speaking) here is some of what 2018 science says about fibromyalgia:
Breakthroughs: Shining a Light on  Fibromyalgia’s Pathology
Though there is a known hereditary factor to Fibromyalgia, with several studies linking its development with certain dysfunctional genes (specifically those regulating neurotransmitters which result in a reduction of serotonin and norepinephrine, but an increase in substance P  in the brain)- there has been progression in our insight.

Exploding Head
Researchers from the University of Michigan and Pohang University of Science and Technology in South Korea published a 2018 paper in the journal Scientific Reports reporting new evidence for a biological cause. Their project used computer models to demonstrate the deviant nature of brain networks present in Fibromyalgia sufferers that are primed for accelerated and global responses to minute stimuli. This leads to a rare hypersensitivity recognised as Explosive Synchronization (ES), a phenomena more commonly observed in the context of power grids failures (when circuits rapidly turns things off) or seizure (networks rapidly turn things on).

Beyond the Brain
A study, lead by Intidyn scientists, recently published in the journal PAIN MEDICINE (the journal of the American Academy of Pain Medicine), points beyond the brain. This research suggests concrete evidence for pathology that involves excessive sensory nerve fibers around specialized blood vessel structures in the skin. This finding is believed to explain ‘Fibro-fog’, or the cognitive impact of Fibromyalgia.

So, what’s the take away?
Though new-found, concrete evidence supporting a biological basis for fibromyalgia-specific pathology and gifted millions of sufferers worldwide comfort and reassurance, we must not neglect the shortcomings of certain medics win relation to patient treatment. If anything,the case of Fibromyalgia should be treated as a lesson in not only scientific theory, but in ethical conduct too. More than ever, the danger of assuming we have all the answers, even if we don’t, should be evident. But above all, celebration should be had as these revelations form a clearer starting point to a brighter future for those with the condition, bringing us steps closer towards formulating more specific and  treatment methods.

Thank you for reading!
Written by Sam Quintua

References 
https://www.youtube.com/watch?v=rJEcJKflGjs
(SciShow summary video)
https://onlinelibrary.wiley.com/doi/abs/10.1016/S1090-3801(02)00072-1
(Childhood aggravation and Fibromyalgia)
https://www.bmj.com/content/297/6647/528
https://www.bmj.com/rapid-response/2011/10/28/fibromyalgia-myth
(Heart sink)
https://www.eurekalert.org/pub_releases/2013-06/itd-fin061713.php (Excess of Sensory Neurones in the skin)
https://www.sciencedaily.com/releases/2018/01/180112132916.htm
(Exploding Synchronization)
https://academic.oup.com/brain/article/127/4/835/398133
(study: observes fibromyalgia patients links pain catastrophizing, exasperating impact on neurological experience of pain. Affects areas of the brain associated to anticipation of pain. Increases activity in areas registering pain during stimulus, )

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