Varying degrees of anxiety are usually described by the person who suffers cervical dystonia and there are a number of understandable reasons. Firstly, anxiety about the condition itself — what is it? What does it mean for me? Will it get better? What can I do? Can anyone help me? Secondly, the person suffering dystonia often has had a tendency to worry in life, frequently feeling anxious, over-thinking things, ruminating and over-focusing on unhelpful thoughts. These are all habits of thought but experienced as that story we tell ourselves, the inner dialogue, that can be so impacting on our reality and perception. Combining these, there is usually an attentional bias towards the feelings of dystonia, the pulls, the tension or spasm, and at these times, the symptoms are worse. Conversely, when distracted or engaged in something more interesting or meaningful, the symptoms ease. And when we are not aware, in essence it is not happening!
When we feel anxious it is because of the meaning with give to those familiar feelings in our body — tingling in the tummy, tension etc. The meaning we have attributed to the causes of those sensations is something threatening and consequently we act by preparing to deal with that threat. This is the same biology as used to face a threat in the wild: fright or flight. Part of the way the body/we deal with threat is to get ready to run away or fight, both of which need mobilisation of resources to our muscles, which is why they tense up in readiness. But, in dystonia there is already overactivity and unwanted movement, so the additional preparation as described can only add to this experience and put out attention on the sensations.
One of the issues in cervical and facial dystonia is altered body sense and sense of self. It seems that when we have an altered body sense, which means that there is a mismatch between what is happening (sensory input) versus what the brain expects (or predicts). This creates a threat and hence the biology that is responsible for detecting and acting upon this state is active in creating a fright or flight response that the person then predicts as anxiety. The same happens in persistent pain states when body sense and sense of self changes; not permanently, but it needs training. This is one of the reasons why exercise and movement reduce anxiety because we improve our body sense.
A significant part of the re-training programme for both dystonia and pain is body sense based. Body sense, ‘where I am’ and ‘what I am doing’, is really a unification of internal sense, external sense and proprioception somewhat threaded together by the narrative that I tell myself. Ironically, when we feel ourselves, we don’t really think about our body! So this is the desired outcome: not thinking too much about our body and in fact using our body to help us focus on the job in hand; e.g. when walking, we don’t normally think about how we are walking, we just walk; the body is thinking for us — aka ’embodied cognition’. When the person says to me, ‘I feel myself again’, then I know that they are reaching or have reached their desired outcome.
Pain Coach Programme and Dystonia Coach Programme | t. 07518 445493