Medically unexplained symptoms and the ‘swamp’ of general practice

Louise Stone

10/06/2019 11:10:31 AM

Associate Professor Louise Stone examines an especially uncertain aspect of healthcare.

Stethoscope question mark
For Associate Professor Louise Stone, the uncertain, messy ‘swamp’ of complex medical problems is a real draw of general practice.

In the varied topography of professional practice, there is a high, hard ground, overlooking a swamp. On the high ground, manageable problems lend themselves to solution through the application of research-based theory and technique. In the swampy lowland, messy, confusing problems defy technical solution.
The irony of this situation, is that the problems of the high ground tend to be relatively unimportant to individuals or society at large, however great their technical interest may be, while in the swamp lie the problems of greatest human concern. The practitioner must choose. Shall he remain on the high ground where he can solve relatively unimportant problems according to prevailing standards of rigor, or shall he descend to the swamp of important problems and non-rigorous inquiry?
– Donald Schon, The Reflective Practitioner, 1987
I love working in the swamp: the messy, uncertain, weirdly satisfying mess of general practice. And there is nothing messier, more challenging and potentially satisfying than patients with medically unexplained symptoms.
These patients are often referred to as ‘heartsink’, but that is supposed to relate to the way we feel as doctors. Because we feel helpless and useless, we often feel our hearts sink when we see these patients.
Unfortunately, the term feels judgemental and patients talk about the heart-wrenching experience of being dismissed and invalidated, simply because we can’t find a name for their distress.
The first thing to know is that patients with mixed emotional and physical symptoms, but no diagnosis, are not the same. Think about the:

  • patient with a history of childhood abuse who presents with unexplained pelvic pain
  • patient pursuing a compensation case who presents with fatigue, chest pain and palpitations after a period of workplace bullying
  • woman who loses her husband to lung cancer and presents with shortness of breath
  • young person with palpitations and anxiety
  • patient with a strong family history of autoimmune disease, with unexplained joint pain but normal investigations
  • patient who has consulted the internet and believes their fatigue, joint pain and rash are due to chronic Lyme disease, despite negative tests
  • grieving patient who presents with unexplained neurological symptoms. 
Somehow, despite these differences, we all know there is ‘something’ common about patients with mixed emotional and physical symptoms but no diagnosis. We just can’t agree what that something is.
I have a long interest in this area. In 2014, I completed a grounded theory (qualitative) study exploring the way experienced and novice GPs make sense of patients with medically unexplained symptoms. The thesis included a number of papers, and since then I’ve done a fair bit of teaching around this difficult issue. I also wrote a paper for the Australian Journal of General Practice summarising a practical approach to the management of medically unexplained illness.
So, here’s what we do and don’t know.
Understanding somatisation is fundamental to treating these patients.
Somatisation is usually defined as the tendency to experience and communicate somatic distress in response to psychological distress, and to seek medical help for it. It has gone by many names over the years, and the concepts have subtly changed.
True somatisation is related to conversion, the idea that emotional trauma can be ‘converted’ into physical symptoms.
However, medically unexplained symptoms are messier than a direct conversion. The mind and body are not separate: one doesn’t ‘do things’ to the other. They interact in complex ways.
Over time, researchers have begun to frame diagnosis of these conditions in several ways:
  • How do the mind and body interact?
  • Why do people present frequently to health professionals with these conditions?
  • How does health anxiety or hypochondriasis fit in? Is it the same thing as somatisation?
Does it matter if the symptoms are ‘medically unexplained’? Can you still have somatisation if your condition has a physical diagnosis? 
The result of all this confusion is that prevalence studies are mostly meaningless.
There are many diagnoses proposed, used and integrated into the Diagnostic and Statistical Manual of Mental Disorders (DSM–5) and International Classification of Diseases (ICD). Somatoform disorders, somatic symptom disorder, hysteria … the list goes on.
The prevalence of whatever this diagnosis is lies between 1% and 85%, depending on what you are measuring.
This aside, we do know that somatisation is a ‘thing’. We just don’t know what, exactly, it is.
Comorbid depression
Depression often occurs alongside medically unexplained symptoms, creating a chicken-and-egg problem.
Does the depression cause the physical symptoms, or do people understandably become depressed because they have disabling physical illness?
Why are these patients considered ‘difficult’? A number of reasons.
In Western culture, we expect that illness will lead to diagnosis, diagnosis will lead to a remedy, and remedy will lead to cure.
In his famous book The Wounded Storyteller, sociologist Arthur Frank calls this the restitution narrative. Yesterday I was well, today I am sick. If I find out what is wrong I can take the appropriate remedy and tomorrow I will be better.
We all expect this and when it doesn’t happen, we feel uncomfortable. Doctors as well as patients.
This can raise strong feelings – frustration, guilt, shame – that are common among doctors and patients.
It doesn’t help to blame the patient (‘She’s just a heartsink/borderline/neurotic woman’). In fact, it’s cruel. Patients are suffering and the lack of diagnosis makes the helplessness and hopelessness worse.
But it also doesn’t help to blame ourselves. In these cases, we tend to over-investigate and over-treat.
These consultations can sometimes feel more like a battleground than a collaboration. Such patients often experience considerable shame and question the validity of their own symptoms and feelings.
Many avoid doctors altogether because they can no longer face a system that invalidates their pain. In turn, this makes them particularly vulnerable to charlatans who offer an extraordinary range of expensive ‘cures’ which can be, frankly, dangerous.
One thing to remember is that many of these patients have a history of childhood trauma. In childhood, they often talked to adults about their experience and were discounted. This makes it particularly traumatic if we discount their pain now.
In an episode of Insight, a number of people experiencing medically unexplained illness and hypochondriasis discuss what it feels like to be stuck in this space. It’s fascinating and asks the difficult question: can we think ourselves into being sick?

Doctors can have a tendency to ‘expect illness will lead to diagnosis, diagnosis will lead to a remedy, and remedy will lead to a cure’.
Botanical versus gardening diagnoses
In medicine, we are often used to ‘botanical’ diagnosis. This is a fracture because it demonstrates a list of features. This is type 1 diabetes, this is type 2.
Of course, it is not always that simple. But we do have taxonomies like botany, with a list of families, genera and species of disease. As medical students, we learn in precisely this way, distinguishing one disease from another and explaining why they differ.
This broadly makes sense for physical diagnoses. But psychiatric diagnoses are not so clear cut. Although we produce taxonomies, like DSM–5, we recognise that these diseases overlap and intersect.
I explain this to patients by saying these diseases are more like watercolours than stained glass – they bleed into on another and there is not a strong line between one and another. They are more like themes, or ways of understanding, than categories.
In a way, this is more like gardening than botany. Consider an English cottage garden versus a Japanese garden. I am no gardener, but I do recognise that there are key features that distinguish them.
If you are like me, you recognise classic examples of these ‘types’. If you were a master gardener, you would be better at distinguishing less typical examples. Psychiatry is like that: diagnoses are more like themes that express themselves in individual ways.
How can we help these patients?
If you are going to work with these patients, you need to find a way to be on the same page.
Patients are worried that you are going to tell them their illness is all in their head.
You, as their GP, want them to address their psychological issues because you know that will help them manage their illness more effectively.
So it’s important to come to a common understanding of the problem. I have written previously about how to help explain the unexplainable using frameworks to help patients understand what is happening to them. Such methods include:
  • Reassurance – ‘I have looked carefully and there seems to be nothing of concern’
  • Somatisation – ‘Perhaps your body is trying to tell you something’
  • Functional approach – ‘Your body is not working as well as it should’
  • Narrative and coping – Finding ways to respect the story and help them cope 
    These patients and their unexplained symptoms can be among the most challenging of your career. But, for me, the most interesting part of general practice is this – the messy, difficult swamp.
This column has been adapted from a post on Dr Stone’s website.

chronic conditions complex conditions depression mental illness somatisation unexplained symptoms

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Oliver Frank   11/06/2019 11:36:07 AM

Dear Louise,

Thanks for this wonderful article. I liked: ‘Perhaps your body is trying to tell you something’. I trained (two years part time) and in therapeutic hypnosis, which is sometimes referred to as the practice of psychosomatic medicine. I practised in this as a special interest within my mainstream general practice. In hypnosis, some people with the kinds of problems that you describe are able to gain a knowledge or understanding of the origins of and reasons for their symptoms, and to find their own ways to resolve their issues and to let go of their somatic symptoms. Please note that I am not suggesting that all people with such problems have a psychological origin (e.g. abuse, trauma of previous serious illness, etc.) for them, or that all of those people who do have such an origin will be able to identify and resolve it. However, for some, the hypnotic approach has been of great help.

Prof Max Kamien, AM CitWA   11/06/2019 1:32:04 PM

MUPS is a recurring problem for GPs. Previous labels have been neurasthenia, (benign) myalgic encephalomyelitis, chronic fatigue syndrome, somatisation syndrome and functional disorder. In 2016, the current ‘epidemic’ of ‘Australian Lyme Disease’ became the subject of a Senate Inquiry. An analysis of the 698 submissions made by suffers of this problem reported that only 1.9% of patients were fully satisfied with their interactions with traditional GPs.1

Perhaps the RACGP could improve the understanding and care of these patients by making it an option for CME point allocation. FRACGPs would identify a ‘heart sink’ patient with a MUPS disorder. If, after 12months, the patient was no worse and the Commonwealth budget for investigations and medications was still intact, that doctor would be allocated 40 CME points. Doctors whose patients improved and who credited that doctor with contributing to that improvement would be awarded 80 CME points.
1. Intern Med J 2018; 48: 422-6.

Indira Warrier   11/06/2019 1:49:45 PM

Dear Louise, Thank you for your wonderful article. When I started in general practice 40 yrs ago, I realised I needed tools other than medication to make a difference to the people you mentioned in your article. This prompted me to undertake multiple courses in hypnosis an acupuncture. The result has been a satisfying career in general practice.
I am retiring as a GP, Hopefully, I will be able to pen some of my experiences into a book form, which might benefit the younger generation.

Christopher Davis   15/06/2019 6:59:23 AM

Great article. I feel this is the difference between GP land and the unswampy world the specialists live in.

Bill Meyers   16/06/2019 12:11:53 AM

Dear Louise,
great article. Like Dr Warrier above , I use medical acupuncture as an adjunct to regular review and counseling of these patients, with the inevitable "visits" from the "thought police" in Medicare. At their last visit they decided that: "You are not the problem, it is your patients- they are too sick! As long as you stay below the 90% we won't bother you again." And true to their word, they haven't.