My thoughts on fibromyalgia are much more optimistic these days. This is in part due to its increasing recognition in society and healthcare.
We are not there yet.
But there has certainly been progress, partly because of Long Covid as recently reported in New Scientist.
For too long, people suffering the symptoms of fibromyalgia have been dismissed, told it is psychological (suggesting not real) and not heard. The additional suffering caused by this attitude is immeasurable.
This may not be a coincidence in light of there being more females than males with fibromyalgia. Gender bias is well known and being increasingly called out — let’s keep doing that. There is no place for it in healthcare or society. A number of media articles, books and studies document gender bias.
Fibromyalgia is a real condition
That there have not been tests or investigations revealing biomarkers does not mean fibromyalgia does not exist.
That is an ignorant position to take. And harmful.
Who is affected?
There are some patterns.
But each person has their own unique story and circumstances.
How do we (clinicians, therapists) discover what this is?
The majority of people I see with fibromyalgia are female, but males do also suffer.
There can be trauma in the backstory — big T and little t.
But not always. We know that many people develop resilience after trauma.
Stress is common. And by this I mean stress that has an impact either because of it’s on-going nature or the particular situation(s) in which the person found themselves.
Sometimes it follows a period of stress and survival. For example, on leaving the toxic relationship or workplace, or a loved one passing after prolonged illness. Survive, survive, survive (humans are incredible at this for many months or years), then unwell. At this point, body systems feel it is safe to do what has been needed for a while, inflammation kicks in and a sickness response ensues.
Many tell the story of caring for everybody else (family, partners, friends, the dog…), which is fine and can be healthy if you also self-care. Without the latter, this is a finite project. Something gives.
Perfectionism and a strong self-critic frequently feature. Why am I not able to cope with this? Or get rid of it? What is wrong with me? These are common questions people tell me they ask themselves.
Feeling shame prevents people from sharing their experiences, keeping it all inside. Or believing that others are bored of the story — “I am even bored of my story”, some say to me.
All of the above are life circumstances. In the main, these are usually no fault of the person, either being out of their control or due to social conditioning.
We have known about the role of the immune system in painful conditions for many years in the pain science world.
This remains novel information and less known in society; an example of the lag.
It is better to think of a neuroimmunoendocrine system, which is an ensemble of the nervous, immune and endocrine systems working in concert.
There are many different chemicals being released by and within these systems, altering the state of your biology moment to moment. In health, states remain within certain parameters.
Moving outside those parameters because of injury, infection (bacteria or virus — there is evidence that viruses may be dormant and activated to trigger the symptoms of fibromyalgia) or pathology (research shows some people have small fibre neuropathy with fibromyalgia and chronic fatigue syndrome; micro blood clots in Long Covid) creates an error in the system. The error is felt as the symptoms.
Taking action such as seeking treatment, resting, and appropriate medication help to minimise the errors in time, and you gradually feel well again.
This is the acute situation. What about the chronic or persistent one?
This is when the errors keep occurring. Actions are not minimising them and expectations about getting better are not realised. You get stuck. The symptoms persist as your systems are now predicting that there is a need for survival and protection.
What is that like? You feel lousy, fatigue, in pain, can’t sleep, concentration and memory are foggy, everything is harder — a sickness response. Like the flu, but going on and on.
Other systems can be involved and in many people, there was already sensitivity: eg/ period and pelvic pain, IBS, headache, migraine, jaw ache and pain.
The biology underpinning much of this is inflammation, which is normal but now over-egged. This is especially at certain times of the day: morning and evening. People often report feeling worse at these times.
So, without injury or pathology, you can have a range of symptoms. This is because your body systems keep predicting protection is necessary, based on past experiences of the symptoms whilst ignoring what is actually happening (no injury). The former seems to be more reliable because of the weight of evidence. This is the sticky bit that needs updating.
Changes in sensory processing in the periphery and centrally (sensitivity) can keep the evidence of a threat at hand and so the symptoms remain the best explanation for your biology right now. Or maybe there is reason for the sensitivity with on-going inflammation that needs to be solved.
It is important to remember that the feeling of your body is being generated top-down as a best explanation for what is happening in your world right now, based on prior experiences. The body tissues themselves cannot produce pain and symptoms, although this is where you feel it.
This is one of the reasons for great hope as it affords many ways of changing your experience.
What is measurable and what you feel are different
Confusion arises because the objective and subjective are mixed up. They are not the same.
Medicine looks for the measurable using blood tests, scans and other investigations as well as a physical examination. But that is not the full picture.
None of these tests tell us what it is like for you. Only you can tell us about your lived experience.
In essence, that is what we seek to change; ie/ feeling better: less pain, less suffering, more energy.
Too often, results do not reveal anything that explains the symptoms. You may be left wondering what is happening, and sometimes do not feel believed.
Having to try and prove you have pain is another cause of suffering.
Understanding how your body systems are generating your symptoms (experiences) begins by having someone listen to your story and then give meaning.
Bringing together the objective (what has been seen and measured) with your lived experience (what it is like) is also vital to make sense of what is happening. How is it that there are no findings or minimal findings yet there are symptoms? We can answer that question. As we can when there is a finding.
There is much more to discover about pain and painful conditions. However, there is great hope with the coming together of philosophy and neuroscience to ask better questions to be investigated. In particular, predictive processing, embodied cognition and enactivism.
They are giving us much better ways of thinking, explaining what we see, what you feel and creating practical programmes of care to ease suffering and help you lead your best life. This is the essence of Pain Coaching.