Listening to your body

“Listen to your body,” they always tell you…whoever they are. “If you are feeling tired and exhausted it means you are overdoing it.” I used to tell people that to. After all our body and mind are inextricably linked. What is going on inside my head will have an impact on how I am feeling, and vice versa.

But what if you don’t only ‘listen to your body’ but watch it too? Monitor it closely every day for changes. Observe how aches and pains seem to shift mysteriously from one joint to another. How your heart misses a beat, or speeds right up more often than it used to. How the pain that you woke with again today in your right arm (which you have self-diagnosed as tennis elbow) has increased in intensity as the small hand has moved around the kitchen clock…probably because you’ve been thinking about it all the time. And the more you dwell on it, the worse it becomes. “Is it arthritis?” you are beginning to ask yourself.

The fingers of both of my hands are stiff now every morning, and the base of my left thumb was painful again today opening the jam jar at breakfast. I know that my uncle developed rheumatoid arthritis when he was my age. He went from being a fit and healthy middle-aged man to a stooped elderly person wracked with pain in the course of only a year. Could this be happening to me? I told one of the GPs I see about my joint pains recently. I’m supposed to have a blood test- but I haven’t yet. I don’t know if I want to know the status of my anti-rheumatoid factor. I’ve started to worry much more about my health than I used to. The number of chronic conditions I have is slowly increasing…and with them my level of anxiety.

I’ve seen many people in my life with what used to be called ‘Medically Unexplained Symptoms, (MUS)’ (and have now been given the name Bodily Stress (or Distress) Syndrome although terminology differs between psychiatric classifications and will almost certainly change again). Symptoms for which there is no clear medical cause, although many suspect that if you look really hard you might find some physiological explanation for them. They were once called ‘functional’ symptoms and milder versions are really common in primary care and out-patient clinics. For example, around 50% of people who are seen in gastrointestinal clinics with new symptoms have a problem for which no obvious medical cause can be found. However, some people are severely disabled by multiple symptoms. They most commonly occur in the presence of other diagnosed and often chronic illness, and may be a sign of anxiety and depression, but this is not always the case. A person with otherwise unexplained symptoms often denies having any other problems that are worrying them, either psychological or social. Sometimes it becomes clearer later that they do indeed have a medical cause for their problems; we found this happened in about 10% of patients over an 18-month follow up period. Missing ‘real pathology’ is what a doctor fears (although they do seem less worried about missing mental health problems). I specialized in not only trying to help people with unexplained symptoms, but in doing research into how to train GPs to help them more effectively and be more understanding about their concerns. And I will admit here I have always experienced them myself to some degree too.

And now I find one particular person keeps coming back into my mind.

Jeff (not his real name) worried about pains all over his body, which he had for many years. He had multiple investigations, almost all of which showed nothing very much of note. We sat down together to go through his general hospital case notes together so we could discuss all the tests that had been carried out in several different departments. I always found this a helpful exercise in beginning to find a common ground with someone. Checking out what we could agree were the problems both in life and with health, and where we disagreed. Whatever the health worries, we could usually agree that the disability and pain interfered with their quality of life and relationships in a major way. Jeff was confined to bed much of the time, and found it very difficult to manage any kind of regular activity outside his home. He was angry and exasperated with the medical profession in their failure to either explain or help him. While we turned the pages Jeff asked questions, and I attempted to answer, explaining what particular phrases meant.

“So ‘at the top of the normal range’ it says there,” he pointed to a particular blood result, “that’s not good then is it, I mean its high isn’t it?”

“Well, it’s still within the limits of what is normal. That’s what’s important. It will also probably vary a bit each time its been checked.” We looked through previous pages and indeed the numbers went up and down. We were both relieved. We carried on much in the same way for about an hour then I noticed Jeff had fallen silent.

“So what do you think?” I asked.

He was looking down at his hands and flexing his fingers as though testing their range of movement. “Well I’ll be honest with you, doc.”

“Go on…”

“All these tests and scans…they’ve never checked my out here have they,” he said pointing to his left flank. “And that’s where the pain is worse at the moment. They’ve never scanned me right here have they?”

At that point I really didn’t know how to reply.

And now I know just how Jeff felt. Before my recent appointment at the kidney unit I was having persistent discomfort in my left flank too. I was constantly checking and prodding and trying to reassure myself, but it was only after the appointment, when I received the results of my latest scan, explained to my in details that I could understand, that I realized that the pains in my flank had actually disappeared completely. I had previously been told that the kidney on that side was enlarged, but this scan showed that wasn’t apparently the case. Only I now have pains elsewhere in my back, and in my joints too. Logically I know that the pains are worse when my mood is low, as I would have predicted; made worse by my level of anxiety. I focus on things I have reason to worry about due to my family history: such as heart disease and arthritis. I do have chronic kidney disease and now associated hypertension, hypothyroidism, irritable bowel syndrome, early signs of cataracts (yes my optician helpfully added that to the list this week) and a long-standing mood disorder. And now I have started to monitor my body just in the way (though not quite as obsessively) as one of my patients who used to chart the progression of unexplained spots across his body in his diary.

Reassurance doesn’t work. I’m worried about my health. The last thing I need to do is to watch or listen to my body. I really need to be distracted from it in a major way. I know that even if I am feeling tired if I don’t get out there and keep getting on with life, setting myself (achievable) goals, life will pass me by while I’m still checking my pulse!

I just have to keep reminding myself just as I used to remind my own patients of that…and keep going.

So that’s the plan then.

A diagnosis of anxiety

On one of those occasions when I peep around the screen at what my GP is typing I see a diagnosis of ‘anxiety with depression’ at the top of the screen. I’m not sure how I feel about that. I suppose I’ve always thought about my problems as being more to do with depression than anxiety. But regardless of the idiosyncrasies of the recording system that GPs use (for the uninitiated, the Reed codes used in British General Practice don’t much conform to DSM or ICD), I think it’s probably right. In my life, low mood comes and goes, while anxiety has been pretty pervasive at the times when it hasn’t progressed to frank agitation.

This all comes to mind recently because the National Institute for Health and Care Excellence (NICE) just published its quality standard for anxiety disorders. It has information on all the different disorders neatly laid out- with specific pathways for Generalised Anxiety disorder, Panic disorder, Obsessive Compulsive Disorder, Post-traumatic Stress Disorder etc. At the same time there has been the usual and continuing debate about the validity of diagnosis in psychiatry in the twitter sphere, in which I occasionally participate.

My problem with NICE guidance is that there are so many different pathways for the different diagnostic categories of what are called Common Mental Health Disorders– which consist of all the anxiety disorders plus depression. Some mental health professionals disparaging call these ‘minor’ mental health problems and the people who suffer with them the ‘worried well’. I’ve unfortunately heard psychiatric trainees use those terms.

Warning: don’t ever use these terms in my presence, I can’t be responsible for the consequences.

If you add in the other common mental health problems in the community, use of drugs and alcohol which many use to self-medicate for these ‘minor’ problems, you have a complex bundle of guidelines for a large section of the community (around 15%) who mostly get their mental health care from primary care. In common with the main classification systems, NICE treat all these as distinct diagnoses. If only life were so simple.

The problem is that in the real world they all overlap, co-occur and change around over time much in the way that my own symptoms have done since adolescence. ‘Anxiety and depression’ is the commonest mental health problem that GPs see. Mixed in with that may be some phobic symptoms, panic attacks, obsessional symptoms along with other features which suggest post-traumatic stress such as hypervigilance. Add to this the common ‘co-morbidity’ with drugs and alcohol, and the difficulty some people with these problems additionally have in social relationships which equates to some degree of personality difficulty, we have the potential to label a person with multiple diagnoses. At the other extreme we could say, these ‘disorders’ are all part of the same problem. You are suffering from something called ‘life’.

My view is somewhere in the middle, but I struggle with it. I’m a supporter of the need for psychiatric diagnosis and anyone who doubts the need for it should first read Robert Kendell’s classic book The Role of Diagnosis in Psychiatry. But to say that doesn’t mean we’ve got it right, or that the same system is appropriate in all settings. In my work with WHO, I’ve helped towards developing the ICD-11 system for primary care, which is a good deal simpler than anything DSM can ever think up. However what is key for me is that a diagnosis is only a construct,

as Kendell puts it:

‘thoughtful clinicians are aware that diagnostic categories are simply concepts, justified only by whether they provide a useful framework for organising and explaining the complexity of clinical experience in order to provide predictions about outcome and to guide decisions about treatment.’

Clinically I have found the NICE stepped care model useful: severity of symptoms is the key to what intervention is likely to be helpful. But my approach to helping people has been to start with their life, their problems and hopes and concerns and help them to work out goals for how they would like it to be different. To work towards this by both finding out exactly what they are experiencing, and have been through, and then use a range of therapeutic tools from medication, psychological and social interventions in an essentially transdiagnostic way according to what is likely to help, both from the evidence base and their own past experience and preferences. This has been how I’ve supervised step 2 workers in Improving Access to Psychological Therapy (IAPT) in Salford where I worked for several years, to deliver care for people who might have ‘anxiety and depression’ in some kind of admixture, but had complex life problems. I’ve utilised a very simple set of ‘working’ diagnoses which can easily change over time.

I think we do underestimate the importance of anxiety, but it’s not just that we fail to recognise anxiety disorders. Anxiety pervades all of the common mental health problems except for in those people who experience depression without it. There is a significant genetic component which I can easily identify in my own family. Anxious symptoms in the presence of both bipolar and unipolar depression tend to make the outlook worse and suicide more likely.

Recently, since I gave up the day job, I’ve been feeling much less anxious. This was (unhelpfully) commented on by a colleague whom I hadn’t seen for a while who decided to mime how agitated I used to be at times. I have to admit that I was (strangely) usually worse when in his company. However this coming week I have to have more investigations for my physical health and the familiar churning stomach, sweating and tension have returned once more. Hopefully, after tomorrow, I will be able to return to the combination of exercise and mindfulness which I have recently found helpful in managing my ‘anxiety’.

Fingers crossed.