I'm not sick but I'm not well

This phrase got me thinking: what happens to people who do not have an identifiable disease, but still feel unwell; when the tests do not reveal any pathology, but they still have symptoms? They get a label, that’s what, because doctors cannot say: “Your tests are normal and you do not have any evidence of an underlying disease process. Further opinions and investigations are unlikely to help, and may lead to unnecessary and potentially harmful treatments”.

I don’t have time for a discourse on medicalisation, but I wanted to ask: What label do these people get? It turns out that it depends on the specialty training of the doctor that sees them.

Most specialties have a diagnosis that can be used to label people with vague, non-specific symptoms without clear underlying pathology. If patients complain of bloating, muscle pains, weakness, fatigue, headaches, dizziness, sore spots, chest tightness, shortness of breath etc., the diagnosis that they get depends on who they see. The following are the diagnoses you get from various specialists:

Gastroenterologist:                Irritable bowel syndrome or dyspepsia

Gynaecologist:                      Chronic pelvic pain or premenstrual syndrome

Cardiologist:                         Atypical chest pain

Rheumatologist:                    Fibromyalgia

Respiratory physician:           Hyperventilation syndrome

Infectious diseases:               Chronic (post-viral) fatigue syndrome

Neurologist:                         Tension headache, migraine, restless leg syndrome

Dentist:                                Temporo-mandibular joint dysfunction

Ear, nose and throat:             Globus syndrome

Allergist:                              Multiple chemical sensitivity

Urologist:                             Interstitial cystitis, painful bladder syndrome

Psychiatrist, GP:                   Depression, anxiety disorder, somatoform disorder

The names for these conditions change over time, and new ones get thrown in to the mix. This list is not exhaustive: the psychiatrists have a lot more diagnoses at their disposal that can easily be retro-fitted to any vague set of symptoms (many more diagnoses than they had during the Rosenhan Experiment). And now sports medicine physicians are diagnosing all sorts of things, often labelled “[INSERT BODY PART HERE] dysfunction” (I love the term “dysfunction”, which basically means “something is wrong” – that’s what makes it a label, not a diagnosis).

So do these ‘diagnoses’ overlap?

Yes, yes they do. This study from the Lancet in 1999 reviewed the subject and found considerable overlap in the diagnostic criteria for these conditions. This is because the diagnostic criteria rely so much on subjective complaints from the patient, rather than the findings from blood tests or X-rays. Not only was there significant overlap between the diagnostic criteria, but the same kinds of patients got these conditions (here), and they were often treated the same way (antidepressant medication and psychological therapies). There is a more accurate label, but it is rarely used (for obvious reasons): Medically Unexplained Symptoms (click here for an overview). More evidence on the overlap of diagnoses between specialties can be found here, here and here.

These conditions used to be called Functional Somatic Syndromes, but the group label changes. Central Sensitivity Syndromes is a recent label used to explain (and group) the syndromes listed above (see here and here). Basically the theory is that these people have nervous systems that are more “sensitive”, so that patients are more likely to complain of pain. I think that this label is at best, poorly supported, and at worst, simplistic, unproven and a backward step in understanding the real reasons for the existence of these syndromes (as psychological and social constructions, or the somatic manifestations of psychosocial influences).

I shouldn’t worry, it looks like that label will soon be replaced by Bodily Distress Syndrome (I am not kidding, here is the link). Nortin Hadler tries not to medicalise this by calling it the Syndrome of “out of sorts”, but this sounds dismissive to the patients, so it will never be accepted.

How do these patients end up with such (apparently) different labels?

Here is how it works. The patient complains of generalised symptoms, and the doctor fits those symptoms into a recognisable syndrome (patterns of symptoms) that fits his area of knowledge and expertise. For example, the rheumatologist will look for tender points: “Does it hurt if I press here? And here?” “Yes!” says the patient who is subconsciously striving for a label to validate and legitimise their symptoms. Once you get 11 tender points you have satisfied the criteria for fibromyalgia.

For gastroenterologists, they will ask questions about changing bowel habits, the patient will answer in the positive, and then the diagnosis is established. All the other symptoms are relegated to peripheral manifestations of the label; in this case, Irritable Bowel Syndrome.

Doctors tends to see what they want to see or what they know, and they guide the patient into known categories of symptoms that fit the syndrome they are expecting, or the only suitable one they know.

Doctors haven’t cornered the market.

I am waiting to meet a patient who came out of a visit to a chiropractor without a diagnosis of spinal malalignment/subluxations that required correction, regardless of what they went in for. As you can see, when we label, we reach for the closest, most familiar labels: the ones we were taught, and the ones for which we provide the treatment. Same goes for every other alternative medicine provider.

Why do patients seek a diagnosis?

(I don’t consider these labels as valid diagnoses in the traditional sense of the word, in that they align with a specific pathological process that can be reliably identified). Firstly, it must be understood that many patients have unexplained pain for reasons other than physical pathology. There are myriad social and psychological reasons for patients to complain of pain and other symptoms (such as job dissatisfaction and unpleasantness at home), and the expression of the symptoms often reflects what is expected, what has been seen or heard before, and what is considered socially acceptable. Seeking medical advice is the social norm for anyone with symptoms, and having a diagnosis established has many implications for the patients, apart from validation of their suffering. But giving them a label may not be the answer to their underlying (psychosocial) problem.

Why do doctors give out these labels?

It is virtually inconceivable for doctors to say to a patient “I cannot find an underlying physical cause for your pain. There may be other psychological and social reasons for your symptoms, and I would be happy to explore that with you, but I do not feel that it would be in your best interests to continue to investigate your symptoms, or refer you for any more opinions or treatments”. Instead they get more tests and, worst of all, they get treatments. Injections, TENS machines, physiotherapy, hydrotherapy, opioid analgesics, and the biggest treatment of them all, surgery. I wish it was acceptable for us to say to a patient complaining of back pain that they have a diagnosis of “unexplained back pain that they cannot currently cope with”, rather than a “ruptured disc” or whatever other finding we lift from the MRI report (there is always something on the MRI scan). The former diagnosis would be more accurate, and less harmful than the latter.

The age-old disease-illness paradigm is alive and well.

We should be treating patients with clear, correctible pathology – those that are sick. However, those that are not sick (no disease) but are not well (have symptoms) may be made sick by medical intervention, and they should not be forced into the disease-illness paradigm. Alternative management strategies should be employed for such patients. Often, talking to the patient and reassuring them that they do not have a serious disease and are unlikely to get worse can be enough. More often it is much harder to undo the long process of conditioning that has led to the current complaints.

As the good doctor Knock said: “Well people are sick people who simply don’t know it—yet.” (link)

For a link to an article describing the extent of the problem, click here.