Medically Unexplained Symptoms

What do doctors do when their patients’ pattern of symptoms don’t appear in medical textbooks? The top ten complaints of patients to primary care physicians in UK include “tired all the time”, dizzy spells, headache and non-specific abdominal pain.

When I was working as a family doctor in Leicester, I could not make an accurate diagnosis based on pathophysiology (how a disease affects the workings of the body) in more than half my patients. “It’s probably just a virus,” I might have said. Or I could have been more honest, saying, “I don’t know what’s wrong but I’ve listened to your symptoms, checked you over, done some investigations and I can’t find anything seriously wrong. Come back if things get worse.”

Referring such patients to a hospital specialist rarely results in a diagnosis. The patients are subjected to more expensive and invasive tests, “just to make sure,” and they end up being sent back to their GPs, often more anxious and not reassured at all. “Maybe my condition is so rare that they haven’t done enough tests?” they might think. More than a third of patients referred to secondary care receive no precise diagnosis. On the other side of the coin, about a tenth of the patients, who were told nothing was wrong after seeing neurologists, were eventually diagnosed a decade later. And of course, neurotic patients are not immortal; we all have to die of something.

I don’t for a minute think that all these patients were fabricating their illness or malingering. With adequate time, good consultation skills and using a biological-psychological-social model of disease, health workers can often understand why these patients are unwell. Many have psycho-somatic disorders, when mental stress can provoke physical symptoms. As doctors, we can’t fix patients whose problems have social causes, such as lack of employment, loneliness or housing.

Being a glutton for punishment, I decided to specialise in this group of patients. I was assisted by an excellent psychotherapist, Lorraine Parker. My role was to have a long consultation with the patient after poring over their extensive medical records, looking for clues of a missed diagnosis or a clinical stone unturned. I would try to reframe the patient’s complaints so they would agree to have half a dozen therapy sessions with Lorraine. “We might not know what’s wrong, but we can try to help you cope with your symptoms.” Once therapy was over, the patient would consult me again to discuss future management. Rather than consulting any doctor, they would try to see the doctor who knew them best. Which was usually me.

Our plan was to assess how often these patients consulted GPs prior to the intervention, how often they saw specialists or were admitted to hospital, how much medication they were prescribed and investigations carried out, comparing this with what happened in the following year. We were hoping that the cost of the pilot would be vindicated by future reduction of health care costs.

Well, that was the plan. I didn’t mind taking on the “incurable” patients (one of whom gave me a talisman of St Jude, patron saint of lost causes), but I wilted under the strain of my wife’s final illness and left general practice a year after she died.

Are things different in Swaziland? Not much. Probably the most common complaints in our clinic are “sides pain”, pain all over the body, and headache. What on earth is sides pain? Backache which has migrated? I still don’t know. Most patients do not expect an explanation for their symptoms, just the medicine to cure it, preferably by injection. If you are a nurse seeing sixty patients a day, the temptation to dish out painkillers, vitamin pills, calcium tablets and other placebos, is irresistible.

As a doctor, I have the privilege of being able to spend more time with patients, so I can delve a bit deeper into their psychological and social situation. When I am using a translator, I am never quite sure how my strange questions and comments have been phrased or interpreted. Translators often feel uncomfortable asking non-medical questions on my behalf. They don’t like seeing patients become emotional and crying.

Virtually everyone will admit to being under stress. There is 40% unemployment here. Those lucky enough to have a job can find working conditions very tough. The massive loss of population from HIV/AIDS and tuberculosis over the past twenty years has disrupted family life. Marriage is less popular and many children are born to single mothers, often without support from absent fathers. The patients usually accept that their medically unexplained symptoms are the result of stress. But they still want medication. I might be able to resist this, using the “doctor as drug” for the treatment.

Patient narratives are often very similar to those in UK:

A middle aged man, who is the only bread winner supporting his extended family, has been sacked. He is desperate for any work so he can continue to fulfil his responsibilities.

An elderly gogo feels lonely and sad because her children no longer visit and support her. “They have their own lives now, but they have forgotten who brought them up.” No wonder she can’t cope with the pain of arthritic joints.

Another young man who has to pay child support from his meagre salary but despite this, his former girlfriend refuses to let him see his son.

The public servant who has got into such deep debt that interest payments swallow up most of her salary.

An old lady whose husband died, who is facing eviction from her home because of a dispute among members of the extended family over the inheritance.

A young lady with pain in her knee, who has visited the three biggest hospitals in the country, seen countless doctors and no one can find anything wrong. Neither can I, but I discover that her auntie had a pain in her knee and ended up in a wheelchair, unable to walk. She is understandably terrified that she is going to suffer the same fate. I’m not sure my long interpretation and explanation of her symptoms has made a difference, but she accepts it.

A nurse referred a man in his 40s to me after several consultations for general weakness and feeling tired all the time. He looked very pale and had a slow pulse of 50 beats per minute, so while we were waiting for the results of some blood tests, we had a chat. He revealed all the typical symptoms of depression, hopelessness, sleep disturbance, loss of weight, energy and appetite, low self esteem, early morning wakening, crying, social isolation, etc. He even admitted that he had tried to hang himself.

Just as I was thinking that ordering the blood tests had been a waste of time, I discovered his haemoglobin was just 5g/dl (about a third of the level it should have been). He was severely anaemic, requiring a blood transfusion. The psychosocial counsellor who saw him took a better physical history than I did, and he admitted that a hospital specialist had wanted to do a colonoscopy because of rectal bleeding. The patient had refused to have the test done, almost certainly because he was depressed. This medicine business can be tricky sometimes.

Very pale tongue, with an odd “map-like” appearance known as Geographical Tongue

Perhaps one of the most challenging patients was a man I met last month. He was in the treatment room, hooked up to a stuttering nebuliser, cloaked by vaporised salbutamol wafting from the mask over his face. He had been diagnosed with asthma by the nurse. He told her he had asthma, and his medical papers from other hospitals supported this assertion. Clearly, he was hyperventilating and about to keel over. I stopped the nebuliser, managed to get him up on the couch and examined him. No wheeze, plenty of air getting into his chest, in fact, too much air.

I tried to talk him down, explaining how his excessive breathing was making his symptoms worse. I wasn’t having much success so I asked the nurse for a paper bag, so he could rebreathe the expired air, correcting the low levels of carbon dioxide in his blood. All bags here are plastic. The nurse looked perplexed at my strange proposal. I had a thought, “Can you please bring me a large brown paper envelope from the office? A used one will do, it doesn’t have to be new.”

I folded the open end of the envelope over the man’s face and tried to get him to reduce his respiratory rate. After five minutes, the glue from the envelope flap had stuck it to his nose, but he still had muscle cramps in his chest and tingling “pins and needles” in his hands and feet. The queue of patients outside was building up and I wasn’t making much progress with my talking cure.

When in doubt, use drugs. I gave him 10mg of oral diazepam, a tranquilliser, and within a few minutes he was sleeping like a baby, with a normal respiratory rate.

While he was resting, I took the opportunity to read through the disorganised mass of papers which constituted his patient-held medical records. More than a year ago, he attended a hospital with a severe headache and managed to persuade the clinician to order a CT scan of his brain. This was essentially normal, though the radiologist had commented that his cerebral ventricles were slightly dilated. Usually, this is of no significance. He took the result of the brain scan to another doctor, who misread the report and thought it showed dilated heart ventricles, indicating a heart muscle problem or cardiomyopathy. This doctor referred him to a cardiologist. The unfortunate man had attended with a headache and then had been told he had a serious heart problem.

His panic attacks with hyperventilation started after this shock diagnosis and unfortunately health workers diagnosed this as asthma. The routine treatment for this here is thirty years out of date: oral salbutamol tablets for prevention. This medication is a heart stimulant and would cause his hands to shake. Inhaled corticosteroids, the standard preventive treatment in UK, are very expensive.

An hour later, he woke up and I had a long talk to him debunking his medical problems. Although he nodded in agreement, I wonder how much of my interpretation he would retain. He almost certainly doesn’t have asthma, cardiomyopathy or brain damage. Just like in UK, I offered to see him in future if his symptoms returned. Personal continuity of care is my most potent weapon. And diazepam.

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13 Replies to “Medically Unexplained Symptoms”

  1. I really seem to struggle with the “doctor as drug” concept for my patients. Partly my own inexperience but also I think due to the demographics. I went to a recent GP Update course where many were saying in affluent areas parents are becoming resistant to accepting antibiotics for their children thanks to a better understanding of long term side effects. Not so where I work where I’ve even had a few consultations where patients feel antibiotics are needed for their back pain.

    I always thought many of the symptoms were socialized. I suspect (but could be wrong) where you work patients are less likely to request letters for housing, visa, social services etc…for which they want certain symptoms documented. Many patients seem seem to have a generic but genuine litany of complaints that they use. I don’t think for the most part it is fraudulent but there is an element in some instances of benefit to the “sick role”. And not surprising but some patients have very hard lives. I’m guessing in Swaziland there’s less of a formalized welfare system but do you seem patients taking on the “sick role” for gain? I don’t mean it in a cynical way, just that ill health being more than just a manifestation of physical symptoms.

    1. There is no demand for “Get a note from your doctor” but I do have some patients who request sick sheets on flimsy grounds. There is no self certification, so by just attending the clinic, working patients need a sick sheet. Swaziland does have pensions for the elderly, but this is just about £3 per week. Very few of my Swazi patients adopt the sick role for secondary gain. I have used myself as “the drug” more as I get older, know my patients better and have more experience – I did attend a Balint group for about ten years. And I suppose I am a bit of a maverick; my borders are rather porous.

      1. Just googled ‘balint group’ well I can tell you that training really worked. That’s what I valued, you listened and saw us as a human being.

  2. Thanks for writing this. Really enjoyed reading it & it brought back lots of good memories of various chats we’ve had and how amazingly supportive you were over the years.
    I am certain that without your dedication and the continuity of care you gave me I would be in a much much worse situation than I am.
    Thank you x

  3. A very interesting piece, Ian. From an anthropological perspective I’ve long been interested in the healing process. I think recent scientific studies on the placebo and nocebo effect have shown the power of the human mind to effect both illness and wellness. We in the industrialised world have long been sniffy about the so called superstitious practices of witch doctors etc. But surely we have misunderstood. People become ill, as you say , for all sorts of apparently non-medical reasons. What the witch doctor does is the equivalent of giving a patient a placebo injection, but with bells and whistles. They create a big psycho-drama that convinces the patient that they will get better, and the body’s own self-healing mechanisms kick in. Also in the process they may also hit on the social source of the unwellness. A curse has been laid for instance. Again as outsiders we misunderstand the nature of curses. The point is they are laid to demonstrate that there is some serious ill-feeling within the community; something that needs to be righted. I’m sure like me you’ve read the accounts of western doctors who have been perplexed by African people dying of curses when there is apparently nothing wrong with them. All of which is to say, we humans have not yet got a grip on what our subconscious minds are capable of – both for good or ill.

      1. Oh yes. The human mind – what depths to be plumbed, and so interesting that there’s not much core variation between UK and southern African. Just sides aches instead of back aches?

  4. Hi Ian what an interesting article. I don’t know if you are aware that I am a qualified Hypnotherapist (amongst other therapies)so am fully aware of how the subconscious mind influences people. Very often my clients come to me as a last resort, after spending years seeing GPs and specialists in the hope that I can ‘cure’ them. I always explain that I do not provide a cure but I assist them in finding the trigger (my definition) i.e. when their symptoms commenced and what the situation was that caused this. I have found that guilt, jealously, social expectations within certain situations/relationships/etc, oh and the media are usually involved and continue to influence the client’s frame of mind very often from early childhood but not exclusively. I have had many successes my proudest being assisting a woman, who had been through the fertility process for 7 years, to conceive. I asked her if she would like to be pregnant in 3 months and she was so startled that she almost cried and of course she said yes. We worked on her perception of her body, womb, ovaries, all of which were perfectly normal. It transpired that she had been keeping a spreadsheet since the moment her and husband decided to try for a baby and when I asked her why she replied that she thought this would give her a better chance. I suggested that she delete this and she was horrified however she did agree to only take her temperature twice weekly reducing to once a week and then once a fortnight until she was finally able to abandon it all together. I also encouraged her to have a healthy sex life outside of the “optimum” period. I saw her on a fortnightly basis and the change in her whole outlook was marvellous to see. She conceived in just under 3 months and now has a beautiful set of twins, a girl and boy. So don’t stop what you are doing you are making a difference!

  5. You kept your hypnotherapist role pretty quiet, Lesley! It must have been very irritating when you were working with the PCT/CCG. If it isn’t “evidence based”, it can’t be supported – what a load of tosh.

  6. Hi Dr C, as you know I’ m interested in this subject. I now have fibromyalgia, related to the dissociation. I’m totally accepting of the fact my pain is somatic. I’m now in my 5th year of (private) sensori-motor therapy which unlike other treatments is based on the concept of the body changing the mind rather than the other way round.

    What little traditional therapy I had didn’t work because of the dissociation from self.

    It’s about teaching dissociative folks to actually live in a body, by noticing it rather than being totally disconnected from that object they inhabit. and it’s about the body healing the mind through releasing traumatic experiences physically (allowing a trembling response to develop etc and just noticing it rather than stopping it) rather than having to verbalise traumatic experiences.

    Its a v different approach to therapy. There’s not a great evidence base behind it due to lack of funding for research but it’s helping me (us) loads.

    It may be pseudo science but the theory is the body remembers traumatic experiences ie say someone’s hands were tied, the body will ache in the wrists, despite the ‘person’ wanting to forget that, the pain will stay until it’s acknowledged and the pain will stay until the body learns that they are not tied up any more, by gently keep releasing the hands slowly. By bringing the pain into conscious awareness and integrating it, eventually it dissipates. Theres more to it than that and that’s a rubbish description as there’s much theory behind it, but that’s the basic idea.

    Anyways your a great doctor but we told you that already 🙂
    Love from Us. X

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