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.

One thought on “Listening to your body

  1. K991 says:

    Beautifully written Linda. MUS has always interested me as a researcher and I have felt hugely sympathetic to the GPs in my studies who were confronted with symptoms that they couldn’t understand as anything but expressions of stress, or anxiety, or depression. After a while I started to have these symptoms too. I very quickly lost my sympathy for the GPs in my study as my descriptions of symptoms were greeted with warm indifference in the consultation. Over two or three years, loss of sympathy was replaced by loss of confidence. I stopped mentioning vague diffuse symptoms, and only mentioned actual physical ones. Rashes. Swellings. Peculiar sharp pains in odd places. All quite transient in time and migrating across the surface of my body. Odd spots. And for no reason that I really understood, interminable investigations for different cancers. Which became a running joke amongst some of my medical friends (although they had one useful consequence: my squint was surgically corrected). I became used to all of these things and started to make jokes about them myself. I lost trust in my own judgment and my own self-knowledge. And then suddenly I was bleeding, and an emergency admission, and in a side-room, and attached to every kind of bag of fluid and I was delirious and pretty near to dying. And I was there for five weeks and lucky to leave on my feet and I was off work for six months. And all of those medically unexplained symptoms had an explanation.

    I guess that puts me in the 10%.

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