Re: I feel I am missing a piece of the puzzle: An important missing piece?
Rhiann Johns writes sensitively about her experience of eventually being diagnosed as suffering functional neurological disorder (1) She says:
“One of the most difficult aspects of living with functional symptoms is the unknowns. Why did it start? How should it be treated? Will I ever feel better? Sometimes I think of my condition as a jigsaw puzzle with a missing piece that I can’t find. If only I could complete the puzzle I might find some answers.”
We are hearing of more and more people who are experiencing similar collections of seemingly unrelated and bewildering ‘functional’ symptoms – which we are discovering DO have a cause!
There are indeed missing pieces of the puzzle – which we are finding.
There may be a variety of reasons why people may initially develop ‘functional symptoms’, and can include various manifestations of extreme ‘stress’ such as illness, infection, injury, psychological distress &/or exhaustion, ‘burnout’ and so on. One question that is NOT currently fully explored is the lifetime ‘medication history’ of the patient. Especially the question: “What happened between the time you were last well and the time that you first began to experience these symptoms”. AND, IMPORTANTLY, “what medicine/s were you prescribed?”.
THE EFFECTS OF MEDICATION - and especially medication designed to target the (previously normal/healthy) functioning of the central nervous system (and including the autonomic system) - need to be much better researched and understood. These medicines include very widely prescribed ‘safe and effective’ [sic] anti-depressants, sleep and anti-anxiety medications.
These medicines are designed to cross the blood-brain-barrier and to tinker crudely with the functioning of the brain/nervous system. So perhaps it is NO WONDER that so many people are developing all manner of ‘functional neurological symptoms’?
Whenever we have tried to raise this with prescribers – and ‘experts’ – we have found ourselves side-lined, ignored or ‘blocked’. The BMJ and BJGP have published some of our writing on the topic, such as this “Unexplained physical symptoms: what is being missed?” (2).
“The actual suffering experienced could more accurately be described as severe homeostatic disruption caused by the prescribed drugs - and can wreck people’s physical health, sense of self, self-esteem, work, social lives and relationships.”
Our efforts to raise these questions to continue to be met with silence – or deliberate willful blindness? – from the medical profession and the ‘experts’.
It is interesting to see the footnote to Rhiann’s article – given as the link to neurosymptoms.org. This is precisely where people suffering prescribed harm are being directed, as more fully described in this BMJ rapid response. “Is the BMJ – and the medical profession that it represents – really ‘listening to patients’ and the public?”(3)
“..as time elapses it is becoming abundantly clear that ‘the evidence’ of prescribed harm is being actively attributed to vague psychiatric diagnoses such as ‘medically unexplained’, ‘functional’ and ‘somatic’ disorders. Patients suffering complex, serious and disabling symptoms - from prescribed drug damage and neurotoxicity - are being directed to websites such as http://www.neurosymptoms.org/ and encouraged to engage in (perhaps online) Cognitive Behavioural Therapy (CBT) and acceptance of their mysteriously acquired disability. There is emphasis on locating problems in the patients’ own early life experiences – and socio-economic circumstances - without any reference whatsoever to the all-important life-time ‘medication history’ and its own trail of havoc in the life and health of the patient.”
Is the BMJ – and the medical profession that it represents – really ‘listening to patients’ and the public?”
Competing interests: No competing interests