Fibromyalgia and domestic abuse recovery.
Welcome to this three-part series aimed at providing guidance and education for people living with fibromyalgia (FMS), particularly those who have experienced domestic abuse (DA).
In this first part, we will delve into what FMS is, how it can be understood through a helpful metaphor, and its association with DA.
Introduction
I'm here to offer insights and support, drawing upon my experience as a Clinical Psychologist with over 22 years of work in the field of Health Psychology, focusing on neurological, pain, and psychosomatic disorders, often in the context of trauma.
Throughout this series, we'll explore how to manage and recover from FMS alongside the challenges of healing from past domestic abuse.
Fibromyalgia and how many people have it
FMS is a more common condition than you might realise, affecting about 5.4% of the UK population, which translates to roughly 1 in every 20 individuals.
However, this estimate may be low, as FMS often goes undiagnosed. Notably, there is a strong connection between FMS and experiences of domestic abuse. Trauma, as we will discuss, plays a significant role in either triggering or worsening FMS.
Understanding how common FMS is, especially among DA survivors, is crucial - as it helps you to realise that you are not alone and that your FMS symptoms likely have a cause. It also points us to how we manage FMS.
Why Get Informed?
FMS is a complex condition that brings about profound changes in one's body and life. For survivors of domestic abuse, the experience of shame and self-blame is all too familiar, and FMS interacts and exaggerates these emotions. FMS often leads to feelings of failure, dependency on others, and a sense of incapability.
As we proceed, we'll explore how these emotional responses can hinder both FMS management and recovery from DA, potentially worsening FMS symptoms over time.
This understanding can be empowering for you, as the first step is to understand what FMS is, what to expect, and how to live with it rather than suffer from it. I've witnessed many people feel great relief and a sense of hope, just from learning more about what FMS actually is - and why they might have it.
What is FMS?
There is much written about FMS and within this, much debate... you'll get a headache if you try to read it all (trust me)!
This debate serves no help for you. What's more useful is a summary of what FMS is, why you might have it, and how to understand the complex science of FMS through language that makes sense.
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.
2. Fatigue
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.
That's a lot to remember. So, to simplify the symptoms into something more memorable and communicable, the 4 themes that describe FMS are:
widespread pain (not one area of the body),
waking unrefreshed,
thinking problems and
constant fatigue.
As you may have experienced, receiving a diagnosis of 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…
How to make sense of it
To empower those with FMS, let's look at how the feeling of pain works in our bodies.
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.
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.
Pain is a lot more complex and odd, as a human experience, than we often realise. But, also, a lot less about injury and more about psychology, than people often realise too.
How Do People Get FMS?
Some individuals have a genetic predisposition for heightened pain sensitivity (a higher volume setting), though the exact cause remains uncertain. FMS is often associated with two experiences:
Injury or Illness: FMS can follow physical injuries or illnesses.
Trauma: Emotional trauma can also trigger or worsen FMS symptoms.
While this area of research is challenging due to the condition's elusive nature, observations suggest that these factors contribute to FMS in some individuals. DA survivors often have experiences that involve both physical injuries and emotional trauma, making them particularly susceptible to FMS.
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 you, both of the above experiences may have happened in your past, — injuries from abuse and extended complex emotional trauma experiences.
It’s important for you to realise this link to how FMS starts, as your FMS likely 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?
In simple terms, 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 you 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 - why domestic abuse experiences make FMS management tricky.
We need to understand the effects of how you might feel about FMS — how anxiety, anger, self-blame and shame cause the volume to go up to the max — even when the right behaviours are being practiced.
We will get to that in Part II