Fibromyalgia is a painful condition that may affect more people than is realised
It is unusual to see chronic pain hit the front pages, but today Kirsty Young announced that she is to take a break from Desert Island Discs because of fibromyalgia. The popular Radio 4 presenter says that she is likely to be away for a number of months.
Fibromyalgia is predominantly a painful condition, but accompanied by a range of other issues and characteristics. These can include headaches, migraines, irritable bowel syndrome (IBS), jaw dysfunction, pelvic pain, anxiety, fatigue, sleep disruption, the so-called brain fog (poor concentration, memory and ability to think clearly), depression and perfectionism to name but a few. The pain itself can often be widespread. Together this makes for a miserable time, frequently with great suffering due to the impact upon the person’s life.
Fibromyalgia and the neuroimmune system
The debate about fibromyalgia continues. Once ignored, there are still quarters who doubt and contest the existence due to a lack of biological markers. Slowly this has been changing and we know that there are likely to be neuroimmune changes that underpin the range of sensitivities.
With the neuroimmune system being very responsive to the way we live, think and act, this explains why many people who suffer fibromyalgia begin their story at, or soon after a period of emotional turmoil or stress. This need not be something huge in life, instead the drip, drip, drip of perceived pressure, the perfectionist need to reach unobtainable levels of performance, the self critic that triggers biological protect states and a lack of self-acceptance are easily enough to trigger such an episode. They are often slow-burners over time when you look back in the story. Each person has their own story that we must hear.
This is indeed why the figures of children and youngsters currently suffering is so alarming. When you listen to the narratives of people, often women, who suffer fibromyalgia, the patterns emerge. The same patterns that we are seeing in these kids who are being encouraged to be self-focused, to be competitive, to get top marks etc. And at a time when their biology is being sculpted and so vulnerable, this is a disaster on the way unless we wake up and changes the way society is going. I’m not even touching on the contribution of social media either!
Let’s be optimistic…because we can
As with other chronic pain problems, the mainstream thinking is out-dated and rather glum. Tacked onto the end of most articles are the same old ‘treatments’, wheeled out as an after thought, with a bit of a yawn. Exercise, talking therapies, medication (usually that’s first — as if dulling the symptoms will ever teach you anything about overcoming the problem!), relaxation and mindfulness are the common ones. Yes, they can be helpful, but there is so much more to it!
The first step is to understand fibromyalgia and the pain and the other symptoms. There is an over-arching biology at play, a level of sensitivity that is manifesting as the lived experience of the person. With understanding we shed fears and limiting beliefs, and put energies into focusing on the steps to overcoming the challenges. We need a direction: what is your picture of success? What do you want, I ask people who come to see me, asking them to frame it in terms of what they want, not what they don’t want (I don’t want this pain is a common start point that soon becomes, I want to go to work, I want to play with the kids, I want to sleep etc etc.).
The clear picture of success is a daily reference point as you create new habits to change state. We seek to generate the best states as often as we can: pleasure, joy, resourceful, excitement, love, compassion, gratitude and many more. We can do this in a number of ways including focus, movement, breathing, a shift in approach and visualisation. These states are accessible to all because they exist in us and are the way we build wellness; and there’s one thing we need to build when we suffer chronic pain, and that’s wellness.
What is pain?
This is a huge question so I shall be to the point here. Pain is all about protection, and forms part of the way we survive. The brain is only interested in survival, so if there is an actual or possible threat, we will respond just in case. Of course we are more than a brain and this amazing organ needs a body to act upon the world. Hence we must always think about the whole person, which is the purpose of the biopsychosocial model. It is the person who suffers, not the body part or system.
Pain is well related to the perception of threat, but is poorly related to tissue damage or state. We have known this for many years, yet much of society still acts according to outdated thinking. Many people and much of healthcare continues to try to explain pain by pictures on a scan. This is not the way it works.
Pain is very much tied into how the person is in their life and their style of life. How do you do life’s challenges is usually reflected in how you do pain and the choices you make. They may not be the best choices and could well need a new approach based on truly understanding pain.
Survive mode ~ constant protection
One of the features of fibromyalgia is the constant state of protect. The systems that look out for us maintain a level of alert and increasingly the world looks more and more dangerous. Remember that we work on a just in case basis. 9 times out of 10 there is no lion behind the bush, but there may be, and that’s all we need to trigger another defensive reaction. This is done automatically in the main, orchestrated by the sympathetic nervous system (fright or flight).
So, one primary job is to restore some balance and the ability to discriminate between real and possible and no danger. As a clinician I share the knowledge, we practice certain skills together and then the person takes them into their own world to use independently. This creates new experiences and reference points for moving on. At all times we are keeping our picture of success in mind — am I thinking and acting in line with my picture or am I being distracted?
The firm grounding of understanding forms a foundation to create a daily practice of rituals and new habits to build wellness. Shifting out of protect to other states is like changing gears in a car. We have to coach ourselves in each moment, nurturing the positive states that biologically are congruent with survival, and change state when we are suffering. Of course there will be a reason why we are in a suffering state and this is not to be ignored. There is a need to be met, which could be reassurance to self, or a need to address a difficult emotion, a need to nourish the body with movement, or more often a range of needs. With understanding and practical tools we can begin to consistently meet our needs and forge a way forward, transforming our suffering moment by moment, day by day.
We are a whole. Each moment is made of thoughts, feelings, perceptions and actions unified as our conscious experience. That is all we have as our biology is in the dark and there are many hidden states that we do not have access to. Same with the brain that has to guess what the signals flowing in may mean. The mind is best thought of as embodied, which has several important implications.
Firstly, the way our body is experienced impacts on our ability to think, decide, and remember. All are grounded in our physical presence., which we must care for and nourish in a compassionate way. Secondly, our body is how we enact our thoughts, feelings and decisions, so it must work for us. Movement is key for survival and hence anything that could affect our ability to act in the world is deeply threatening. And thirdly, for these to happen we must be connected with our bodies. Many people appear to be disconnected or ‘avoid’ their bodies because they don’t like how they look or feel. Simply, you cannot address this unless you are engaged with your body.
Understand pain (and your condition) to understand your potential
I wish Kirsty Young well. It can appear to be a tough road, especially when many of the messages are doom and gloom. However, I would say that we are now in a time of disruption; disrupting this kind of dated thinking. Disrupting is what I am doing (Understand Pain social enterprise), because we do not need to suffer the way in which we are. We have many ways to reduce and transform suffering.
There are numerous practices and tools that can support and encourage a way forward for each person, but they need the know-how. That’s the key bit. The practices must address all the dimensions of a pain experience. And this is why I brought strengths-based coaching together with pain science using the true biopsychosocial model. To use what we know about pain with an approach that gets the best of people so that they can achieve their picture of success. Tools are just tools, but with know-how we add wisdom to their use to get results.
On we go!
For more on The Pain Coach Programme to manage and overcome pain, see here