Yesterday I spent the day in Leicester and Northampton seeing several people suffering facial pain with a colleague who has been working in the field. All pains are unique to the person, however, I feel that there are some particular features of facial pain, which are similar to those of facial dystonia. Identifying these shared characteristics has guided treatment and training techniques that aim to improve sensorimotor function as part of adapting and restoring a sense of self.

The loss of the sense of self is a significant part of suffering in my view. People describe how the pain or dystonia impacts upon their lived experiences and their choices, narrowing both. This means that they are not doing what they wish to and hence do not feel themselves as they feel they should. A shift has occurred, part of which is constructed via the ‘physical’ sense of the body. Of course we have a unified experience of ‘me’ including the sense of the body, a sense of a past, a projected future and the inner dialogue that strings it together.

We literally face the world with our face and hence anything that affects our perception of how we are doing this will impact on how I feel, think, the actions I take and perceptions I perceive. There is a spectrum: a red spot through to jaw dystonia — something visible to others that makes us second guess what they may or may not be thinking. Quite easily this can mean we avoid going out or seeing people. The isolation that ensues then gathers momentum, affecting us on many levels including genetically.

In cases of facial pain there may be no clear and consistent visible signs such as the involuntary movements of facial dystonia, however there are often habitual posture and facial expressions — tension, attempts to relax by opening the mouth, rubbing, speech impediments. When we are in pain, our body sense can be different, the perception of the environment can be different, the way we plan changes and our emotional state is one of protection, as is that of our underlying biology. Whilst this is vital for survival when there is an actual threat (an injury or pathology), in most cases of persistent facial pain and other pains, there is no significant injury. The pain is a habitual response to perceived threats that increase in number with time via learned responses and expectations. Things that would not normally pose as a threat now do, including the way we think about ourselves and the world. With a sensory system detecting changes internally and externally, in survive mode we can be jumpy and very responsive.

Facing the world with a painful face is challenging. Understanding pain is the first step to steering change in a desirable direction — how do you want to be? When the person understands that pain can and does change, and that they are the drivers of that change, then new habits can be formed — new habits of thought and action that are practiced over and over to create the right conditions. Likewise in dystonia, the practice of new habits to change the way in which the sensorimotor system is working but integrated with training that addresses the influences upon this system — e.g./ the environment, thinking, emotion. Learning to recognise and let go of unhelpful and distracting inner dialogue, focusing on what you can do, noticing positive emotions and how you evoke them, re-training sensorimotor function, gradually doing more normal and desired activities are all part of a comprehensive programme based upon the neuroscience of pain and using your strengths to be successful.