It can be emotionally challenging when a diagnosis proves elusive. Don’t suffer alone, says Annette Kishore
“Persistent bodily symptoms with functional disability but no known pathology."
(Fink & Schroeder 2010)
The term “Medically Unexplained Symptoms” (MUS) is used when current medical knowledge is unable to explain the cause of the presenting symptoms – physical symptoms with no known physical cause.
The physical symptoms are real and they can affect your day to day functioning significantly. However, when there is no diagnosis to understand your physical symptoms, it can feel more emotionally challenging and difficult to cope with. Individuals sometimes fear that “other people will think it is in my mind” or that you are making it up or pretending to be ill. Many people prefer to use the term “Persistent Physical Symptoms” (PPS).
MUS/PPS can describe a range of symptoms including pain (eg abdominal pain, joint pain, non-cardiac chest pain), headaches, tiredness, dizziness, non-epileptic seizures, paralysis, muscle weakness, numbness, tingling and bloating. For some individuals, their symptoms may fall under the umbrella of a condition that may not be very easily diagnosed or poorly understood, such as irritable bowel syndrome, chronic fatigue syndrome, fibromyalgia and functional neurological disorder.
Physical symptoms can lead to changes in your life. You may notice that you avoid activities or that you have periods of overactivity followed by underactivity or you may have disturbed sleep and irregular sleep patterns. Challenging emotions such as stress, anxiety and depression often co-exist with these conditions. These can affect a person’s ability to cope with the symptoms effectively and they may even contribute to a worsening of the physical symptoms over time. Treating the psychological symptoms can help you to manage the physical symptoms and learn to cope better overall.
The research evidence suggests that psychological intervention such as cognitive behavioural therapy (CBT) can help with these conditions. CBT can help to identify and bring about a change in unhelpful thinking which may be getting in the way of your ability to manage the physical symptoms. You may have unhelpful thoughts such as “I have to wait until I feel better before I can make any plans”, “I have to avoid doing this because it will make my pain worse” or “I need to check how I feel when I wake up”. The research suggests that a CBT approach can help with a reduction in physical symptoms, anxiety and depression symptoms as well as an improvement in physical functioning.
A therapy setting can provide a compassionate space for you to be heard and to help you make sense of your experience. You can work collaboratively with your therapist to describe and create an understanding of your symptoms using a combined biological, social and psychological approach. This may help to increase your ability to communicate and explain what you are going through to others in your lives.
Another example of where therapy could help is when people sometimes push themselves as much as they can to get things done on good days only to crash afterwards. Once the person feels better, they start again, sometimes even before fully recovered. Periods of rest get longer and periods of activity get shorter. This is called the “boom and bust” cycle. In a therapy setting, the individual could work on changing how they approach their activities by looking at the situation and their response from different perspectives. The goal would be that they keep being active but doing so in a planned way that brings about greater productivity over the long term. Diaries can be used to identify levels of activity. It may be useful to look at how you could more consistent with managing your activities, while increasing the balance between valued activities, rest and responsibilities. Activities can be based not in relation to the symptoms but according to what you have planned. Activities can also be gradually increased. It may be useful to notice if any patterns of thinking are getting in the way such as “I should push myself to do a good job” or “If I don’t do this now, I’ll feel I failed” or “I won’t try; what’s the point”. Notice how these thoughts make you feel and ask yourself if you would say this to someone you cared about. Be kind to yourself too.
For now, a place to begin would be to start exploring how you manage stress, for example, trying to incorporate into your daily life strategies such as breathing exercises, muscle relaxation, gentle physical exercise, connecting with people and taking part in pleasurable activities. You may have noticed that symptoms can be quite attention grabbing. A useful practical exercise is to try to re-focus your attention on enjoyable and valued activities. Always start with what you find pleasurable and build up to responsibilities. Try to shift the focus away from symptoms to thinking about what you can do something about. This may incorporate problem solving skills. Mindfulness based activities can help to focus externally and move one’s attention away from symptoms.
The research suggests that many people who have bodily symptoms with no underlying physical cause can be helped by talking therapy and self-help. Quality of life with MUS/PPS can improve through learning about what psychological factors may be contributing to your symptoms, learning new strategies and working on what you can do to manage these symptoms better.
Annette Kishore is a clinical psychologist at our centre in Norwich
