The what and why of fibromyalgia (FMS), alongside DA experiences.
In this series, I will offer education/guidance to therapists and advisors on how to support fibromyalgia (we will refer to this as FMS) management/recovery alongside trauma work, for adults who are recovering from domestic abuse.
This 3-part series will cover:
How to describe FMS to people, to create that ‘Aha’ moment that creates hope.
How to move people from frustration, anger and shame at their bodies, towards self-care, and motivate them to work on this.
Evidence-based practical approaches for managing FMS (and possibly reducing its impact, significantly). A toolkit for you and those you support.
A quick credibility summary
For those who don’t know — I am a Clinical Psychologist and also the author of the domestic abuse recovery book (Get Out Get Love).
As a Psychologist, I worked within the NHS for over 22 years, primarily focusing on Health Psychology (neurological, pain and psychosomatic disorders alongside trauma).
A big part of my specialism was supporting FMS recovery — most often in the context of past trauma.
FMS and Domestic Abuse
FMS is much more common than people realise, which is one of the first facts to understand yourself and to share with those you support.
It is rarely talked about in public spaces, for reasons we will get into, but it is estimated to affect about 5.4% of the UK population (about 1 in every 20 people)! However, this figure is also likely an underestimate, as it is known that many GPs fail to spot or identify FMS.
Within this high prevalence rate is a known link between domestic abuse (DA) experiences and an increased likelihood of developing FMS. This is due to the somewhat established observation that trauma plays a role in either triggering or worsening FMS, which I will talk about later — in terms that are accessible.
At this point, recognise the prevalence for all people and the higher prevalence in DA survivors.
Why should you get informed?
FMS is a complex condition, in that it includes body-based changes and symptoms that are life-changing and challenging — which are perhaps caused by and definitely enmeshed into the challenges of recovery from domestic abuse.
One example of this is shame and self-blame, common to people who have left an abusive relationship. When I say common, I infer much more than that — I really mean that these traits have been shaped into the worldview of victims, as a means of coping with abuse. Without unpacking all of this here, I am assuming the reader agrees that abuse survivors are over-practiced and easily triggered to feel both shame and self-blame.
FMS interacts with these thoughts and emotions, as it includes a repeated experience of one’s own body letting a person down, without a clear understanding as to why.
The experience is often one of repeated failure, collapse and gradual worsening over time. For many people I’ve met with FMS, they describe anger at themselves and a sense of shame for being incapable of many life tasks and/or the need to rely on others, repeatedly.
I will show, as we move forward, how these thought and emotional responses (and others) not only get in the way of managing FMS but also may block recovery from DA and in fact cause a worsening of FMS symptoms over time.
Knowing this, as a supporter — can be incredibly useful to clients, as the first need for most people is to understand what FMS is, what they might need to know, and what practices can empower them to live with FMS, rather than suffer it.
What is FMS?
There is much written about FMS and within this, much debate. This debate serves no function for people who experience the symptoms of FMS and so for the purposes of this series, we will consider both the dominant perspectives of FMS diagnosis, and etiology alongside approaches for communicating these to people you support.
The commonly reported, and medically accepted, symptoms include:
1. Widespread Pain
Duration: The pain typically persists for at least three months.
Distribution: The pain is widespread, occurring on both sides of the body, and above and below the waist.
Persistent Tiredness: Even after adequate sleep, individuals with fibromyalgia often experience a constant sense of tiredness.
Non-Restorative Sleep: Sleep is often disrupted and unrefreshing, contributing to daytime fatigue.
3. Cognitive Difficulties
“Fibro Fog”: This term refers to the cognitive issues associated with fibromyalgia, including problems with memory, concentration, and focus.
4. Additional Symptoms
Muscle Stiffness: Especially in the morning or after periods of inactivity.
Headaches: Frequent headaches, including migraines, are common.
Irritable Bowel Syndrome (IBS): Symptoms such as abdominal pain, bloating, and altered bowel habits.
Depression and Anxiety: Mood disorders are often associated with fibromyalgia.
Sensitivity: Increased sensitivity to pain, as well as to other stimuli like noise, light, and temperature.
By no means am I suggesting that you become a diagnostic expert in FMS, but… it is worth knowing how to both recognise and communicate these symptoms for two reasons.
Firstly, many people with FMS don’t know this list themselves and respond very well to having their experience validated..i.e. seeing this list after they were diagnosed.
Secondly, many people go undiagnosed — and if you notice these challenges in the stories of your clients, it can sometimes be appropriate to ask them if they’ve asked their GP about fibromyalgia.
This has to be handled very carefully…FMS, as you can see, shares a lot of physical symptoms with general trauma recovery and with the exhausting and often stressful process of leaving an abuser.
To simplify the symptoms into something more memorable and communicable, the 4 themes to listen out for are:
widespread pain (not one area of the body),
thinking problems and
Again, many of these are also common to domestic abuse recovery where abuse related injuries may cause pain, trauma may cause memory issues, and stress may create focus issues etc… so don’t become overconfident in naming FMS as the cause. Simply notice when it feels worth exploring, and nudge the client to ask their GP, if their symptoms appear to cause significant disruption to their daily functioning.
However, FMS for many people is rarely an answer, on its own. It often brings more questions and more confusion. This is because many people are not given good explanations of what it is, why they have it and how to manage it.
Let’s address these needs…
So, what is it?
The million-dollar question.
I’d argue that how we answer it depends on the audience and what the answer is meant to do.
In this case, the audience is people with FMS and the answer we provide is meant to empower them to manage it. For that reason, I’ll use the creative license of an experienced clinician to give you an account of FMS that I’ve seen help many, many people. As I provide this account, reflect on how it updates your own ideas about pain and chronic pain experiences, before you think on how to pass this to clients. It has to feel right to you, before you can lead others towards the same understanding.
A helpful metaphor — to share with your clients
Here’s an account of how I describe FMS to clients…
Think of the brain as a place where we decide what we feel. Do we feel cold, hot, pain in our leg etc? It all happens in the brain… not the body. What I mean here is that pain, it is felt by the brain — not the part of the body that hurts. Bear with me…
There is evidence for this. For example, many people who have a leg amputated feel the pain in their foot — which no longer exists. Phantom limb syndrome. We can feel pain, in limbs we don’t even have! I once had a patient who felt pain his in artificial leg, but if he removed it and looked down — the pain switched to his other, remaining leg as the brain tried to make sense of feeling pain in a foot, when no foot could be seen.
We can also not feel pain when we should. Everyone has noticed a bruise or a cut, with no memory of how they got it. Damage to the body, but no sensation of pain when it happened. We were distracted, busy or having fun — the brain chose not to raise our awareness of it at that time. Many soldiers report not feeling bullet wounds at the time, which is bizarre, given how painful that should be.
We can also reduce pain via distraction. We do this often with children. They are crying about a cut knee, we make them laugh or put on a TV show. I once saw a doctor perform magic tricks and inject children in their arms, not one flinched! The art of distraction, medicalised.
Pain is a lot more complex and odd, as a human experience, than we often realise.
Here we are educating clients to realise that the brain has to monitor our pain senses (nerves) to feel for pain. With this realisation, we can build in a visual metaphor that helps to make sense of FMS…continuing the explanation:
The brain relies on the peripheral and central nervous systems to monitor for pain, nerves from the body bringing information into the brain. It can help to visualise this as a series of wires that go out into the body connected to a set of headphones in the brain, that are listening — the pain perception system.
When we are excited and having fun, the volume is turned down on pain and the volume is higher for other experiences — the brain doesn’t hear much pain (we don’t feel much pain).
When we are very stressed and upset, the volume is turned up (we feel more pain) as the brain listens out carefully for danger and injury.
The main message here… is that the brain reduces or increases how much it listens for pain, depending on our needs in a given moment and our emotional state (emotional state being very relevant, for our clients).
FMS can be thought of as a condition where this volume level is set high and often to the max (flare-ups etc). Pain is felt when it shouldn’t and the excess of pain information causes brain fog, sleep issues, fatigue, and of course the sensation of widespread pain.
The feelings are real, as all pain is experienced in the brain.. but the cause of the pain is not injury, it is the volume being set so high that we feel pain when no injury exists.
This use of imagery in describing FMS is incredibly useful to people, in my experience. FMS feels so difficult to track, with the symptoms changing day to day, and so it is hard to create a story of the experience that makes sense.
This metaphor provides a theory of FMS that supports future efforts to manage it, to reduce the volume on our pain system. It’s a useful way of explaining FMS to the people you support, without getting too involved in the debates about biological mechanisms — it relates more to the experience and because of that, it is validating and empowering.
How do people get FMS?
In terms of describing where FMS comes from, how we ‘get it’, we want to keep it simple — as the science is complex and unnecessary to dive into, for supporting clients.
Some of us have a genetic risk that this pain volume may be set too high, it is unknown why and what causes this to happen — but there is some agreement that the risk of it happening is genetic. It is observed that this increase in volume is associated with 2 experiences:
Injury or Illness: where fibromyalgia seems to follow injury or illness.
Trauma: Where FMS follows emotional trauma.
It’s a messy science area — as it is difficult to carry out research on a condition that we cannot test for, or measure in terms of severity. With that said, the research to date supports these theories from what’s been observed in people who report FMS.
For DA survivors, both of the above experiences can happen in their past, as we know — injuries from abuse and extended complex emotional trauma experiences.
It’s important for DA survivors to know this too, as their FMS has a ‘cause’ which means it’s not all some great mystery… and when things have causes, they often have solutions too.
The volume went up for a reason, it can come down too — but that will take understanding, an approach, and patience.
Is FMS curable?
Put simply. No.
I say this as the wrong question is being asked… and it is asked too often.
We cannot cure ourselves of how the body is designed and how we are made. We are all listening out for pain and for all of us the volume goes up and down. There are reasons that for some of us the volume is high for prolonged periods, valid reasons. FMS after abuse is the response that, for some people, the body chose. So, finding a cure does not really make sense.
The question we need to be asking is, can I lower the volume…?
The answer is, yes.
Which leads to the question, how?
But before we can work on the how we need to work a little more on the why, the why in the context of domestic abuse — and why domestic abuse experiences make FMS management tricky.
We need to understand the effect of how clients feel about FMS, how they relate to it — how anxiety, anger, self-blame and shame cause the volume to go up to the max — even when the right behaviours are being practiced.