CRPS ~ a condition of great suffering
Undoubtedly CRPS is a condition of great suffering. The pain and array of symptoms that characterise complex regional pain syndrome present one of the greatest challenges to the person as they try to live their life. Having worked with many people diagnosed with CRPS (see Budapest Criteria here), I have seen great and courageous effort put into getting better and overcoming the problem. Overcoming a problem means that the condition is not defining the person, that they are much more than the condition and are widening their focus to engage in meaningful activities. There maybe pain at times, but they know what they can do to increasingly minimise the impact or transform the pain skilfully with different techniques. We are always changing and our body systems updating, which creates potential and opportunity. It is this we can work with to seek to overcome pain.
Suffering is simply defined as ‘the state of undergoing pain, distress, or hardship’ (Oxford Dictionary). A deeper definition by Cassell (1982) describes suffering as ‘a state of severe distress associated with events that threaten the intactness of the person and stated that suffering occurs when an impending destruction of the person is perceived; it continues until the threat of disintegration has passed or until the integrity of the person can be restored in some other manner.’ One of the key elements of Cassell’s definition is the reference to the integrity of the person. In any condition, we must consider and refer to the person and not just a part of the person. No part of an individual can exist without the whole, and indeed it must be the person who suffers and not their arm, hand, leg or back. These are the locations in the body where we experience sensations, yet there are workings behind the scenes that are vitally part of this experience that we cannot see or indeed perceive on a day to day basis, for example the activity of the brain.
As clinicians we are focused on easing the suffering of the people who come to see us. Pain is one cause of suffering that is the sensation and qualities that we can interpret as ‘bad’ or a sign that something is wrong. The actual ‘what it is like’ to be in pain is not separate from the way in which we think about it. An individual well practiced in contemplative techniques may be able to differentiate and sit with the feeling of pain, concentrating on what it is like without becoming embroiled with the thoughts and emotions, and indeed this eases suffering immeasurably. This skill requires regular practice of mindfulness meditation, and in so doing, the person can be more observant of the pain, without the judgement that makes it ‘bad’ rather than it just being the pain itself. The second arrow idea helps to clarify this phenomena.
The first arrow, piercing the body, is the feeling of pain. The second arrow, landing in the same place, is when we cause further suffering by the way we choose to think about the pain with the subsequent feelings and emotions. The second arrow is arguably when most of the suffering occurs and is addressed with simple measures such as really understanding pain to reduce the fear and anxiety, both of which fuel pain, developing a working knowledge of pain that gives the person the skills to think in the right way and to choose the best action in that moment, gaining insight into the causes of one’s own suffering and choosing a different path for a different experience and steering a course towards the vision of a meaningful life. This last skill is primarily about being able to focus and maintain attention on a vision, this being the model of success, and address any distractions that usually emerge in the form of unhelpful thoughts.
The first arrow also needs attention as we must create the conditions for healing. There are a number of well known biological changes in CRPS and other chronic pain conditions, and these are addressed in different ways. Medication and interventions are sometimes chosen, but always needed are ways to navigate each moment, day to day, specific training to improve body sense, movement and tissue health, together with practices that promote the general health and well being of the person. The skills of well being are a fundamental part of the Pain Coach Programme simply because they create the right conditions for being well. As we become healthier and as the person feels better in themselves, which can happen in many different ways, the pain and suffering ease. This comes back to the absolute need to address the person, the whole person.
There is much greater understanding of CRPS and chronic pain now. We can cut through some of the complexity with explanations and ways forward. Understanding that pain can and does change like any experience, knowing what one can do in any given moment builds confidence and belief, and developing the skills of well being mean that it becomes easier to focus on the necessary training and strategies to create the conditions for health and gradually resume meaningful activities. A focus on ‘what I can do’, even if it is a small amount to begin with, and then building up the time/amount, alongside the training and day to day techniques takes the person forward in their chosen direction.
CRPS is a condition of great suffering but there are ways to ease suffering that can be learned and practiced, all on a basis of understanding pain and the condition. This builds confidence and belief and a sense that ‘I can’, which is developed together with training to move better, become fitter and feel well. We are designed to change, and we can make choices when we know that they exist. Clinicians are in a position to unpack the complexity of pain, and in so doing show people that they do have choices and how to harness their potential for getting better and living meaningful lives.
I am running the London Marathon this year (2017) for CRPS UK and UP | understand pain. Please support their work to change the problem of pain by donating here