For patients who have no obvious physical cause for their symptoms, trying to get a diagnosis or effective treatment can be a nightmare.
It’s a common problem: in as many as one in five cases, doctors find no explanation for a patient’s symptoms or for their severity.
Though the symptoms are real, patients can end up being told it’s all in their mind.
This will ring all too true for many with conditions such as chronic fatigue, fibro-myalgia (characterised by widespread pain and fatigue), irritable bowel syndrome, unexplained chest pain or interstitial cystitis (not caused by infection).
For patients who have no obvious physical cause for their symptoms, trying to get a diagnosis or effective treatment can be a nightmare
Not only do these problems, known as functional disorders, cause misery, but they cost the NHS a fortune.
Treating medically unexplained symptoms cost £3.1 billion a year, more than stroke or heart disease.
But research suggests these different diagnoses are all types of a single illness, bodily distress syndrome (BDS) — a new condition that’s just been included in the draft of the next World Health Organisation’s International Classification of Diseases, the diagnostic bible for doctors.
A study in the British Journal of General Practice last year, based on 1,400 patients, found around 17 per cent would meet the criteria for BDS.
The term is used to describe medically unexplained symptoms, and recognises illness has roots in the body and mind, paving the way for new treatments for many patients who may have been told symptoms were ‘in their heads’.
‘There is increasing awareness that we have to treat the whole person and BDS is a recognition of that,’ says Dr Alastair Santhouse, a consultant psychiatrist at the South London and Maudsley NHS Foundation Trust.
‘The fact is disorders do not have to be either physical or psychological: just because we have physical symptoms doesn’t necessarily mean the cause is physical.
‘With tension headache, the pain is reduced with paracetamol, but we also know it’s reduced if we treat the underlying stress.
‘Many patients with bodily symptoms don’t get a physical explanation and, therefore, often feel it is seen as being ‘in the mind’ and perhaps is taken less seriously.
Recognising we need to look at conditions holistically will move us away from the fallacy that if there is no obvious cause, symptoms must be imagined.’
One theory is that people with BDS have an increased sensitivity to bodily signals, and the brain’s filtering system, which screens out unimportant messages, stops working properly: it’s these signals that become the symptoms.
Conditions such as irritable bowel syndrome are costing the NHS a fortune. They are known as functional disorders and cost £3.1 billion a year, more than stroke or heart disease
Anxiety may partially trigger this. Patients then pay extra attention to the signals, becoming more anxious; this anxiety leads to more severe physical symptoms, which add to the worry in a vicious cycle.
The symptoms, which are real but have no measurable physical basis, become the problem.
Dr Lene Toscano, from Aarhus University Hospital in Denmark, which carries out pioneering work on BDS, says: ‘In effect, the symptoms are the disease, yet patients can be told they are imaginary or it’s a mental problem.
‘Treating the condition as though it were 100 per cent physical or 100 per cent psychological will not help them get better.’
The Aarhus team found there is an overlap in symptoms between different disorders: a patient with fibromyalgia, who experiences widespread pains, may suffer fatigue, while someone with chronic fatigue syndrome can have muscle aches.
Experts have found there is an overlap in symptoms between different disorders: a patient with fibromyalgia, who experiences widespread pains, may also suffer fatigue
Professor Per Fink, who leads the research clinic for functional disorders and psycho-somatics at Aarhus, says: ‘Grouping such patients under BDS would help them understand the symptoms and treat them.’
Cognitive behavioural therapy, which aims to change a patient’s behaviour by altering the way they think, can help.
He says BDS can also be treated with exercise and antidepressants (which is thought to change the way in which the symptoms are experienced in the brain so they are less bothersome).
Professor Peter Whorwell, a gastroenterologist at the University Hospital of South Manchester, says: ‘I’m sure there’s a strong interaction between mind and body in functional disorders, but that applies to most diseases.
‘We do need new approaches to managing functional disorders.
‘However, including the word ‘distress’ in the title is a backward step, as it implies a strong psychological component, and these patients are sick of being told it is all in their head.’