What Is Fibromyalgia?
Understanding the Condition Behind the Pain
I know what it feels like to wake up exhausted before the day has even started. To carry pain that nobody can see, and struggle to explain to people why you look fine but feel anything but. I’ve been living with fibromyalgia and CFS since 2022 — and after nearly two years of tests, appointments, and more frustrating dead ends than I care to count, I finally received a formal diagnosis in 2024.
That journey — from the first symptoms to finally having a name for what was happening — is part of why Versus Fibro exists. Because I needed a place like this and couldn’t find one.
So let’s start at the beginning. What actually is fibromyalgia?
What Is Fibromyalgia?
Fibromyalgia is a long-term condition characterised by widespread pain throughout the body. Unlike pain caused by an injury or inflammation in a specific place, fibromyalgia pain is often unpredictable, can move around the body, and doesn’t follow the rules you might expect pain to follow.
People living with fibromyalgia can experience pain for days, weeks, or even months at a time. Symptoms fluctuate — good days and bad days can come and go without any obvious trigger, which makes planning your life around it genuinely difficult.
Alongside the pain, fibromyalgia commonly causes fatigue, sleep disturbances, tenderness, and cognitive difficulties that many of us know as “fibro fog” — that frustrating haziness that makes it hard to concentrate, find words, or hold a clear thought.
According to the NHS, fibromyalgia may affect around 1 in 20 people in the UK — somewhere between two and three million people. You are far from alone in this.
Who Gets Fibromyalgia?
Fibromyalgia can affect anyone, at any age. It’s most commonly diagnosed in people between the ages of 25 and 55, and it is diagnosed more frequently in women than in men — though men absolutely do develop fibromyalgia, and their experiences are often underrepresented. It can also occur in children and in later life.
How Is Fibromyalgia Diagnosed?
This is where things get complicated — and honestly, where a lot of people’s frustration begins, including mine.
There is currently no single test that can confirm fibromyalgia. Blood tests, scans, and investigations are used not to diagnose it directly, but to rule out other conditions that can produce similar symptoms, such as rheumatoid arthritis, lupus, thyroid disorders, and other autoimmune or inflammatory diseases.
Diagnosis in the UK is primarily clinical — meaning a healthcare professional assesses your symptoms, your history, and the full picture of how your condition affects your life.
Many practitioners use the American College of Rheumatology (ACR) 2016 criteria, which look for:
- Widespread pain affecting multiple areas of the body
- Symptoms lasting longer than three months
- Symptoms that cannot be better explained by another condition
The Royal College of Physicians also recommends a holistic approach — looking at biological factors (pain patterns, fatigue, sleep), psychological factors (emotional wellbeing, stress), and social factors (work, finances, daily impact). It’s about understanding the whole person, not just chasing a test result.
The process can be slow. For me it took nearly two years. If you’re still waiting for answers, that waiting is valid — and your symptoms are real whether or not a piece of paper confirms them yet.
What Causes Fibromyalgia?
The honest answer is that nobody knows for certain.
Current research suggests fibromyalgia involves changes in how the brain and nervous system process pain signals — essentially, the body becomes hypersensitive to pain in a way that isn’t connected to injury or inflammation.
A number of possible triggers have been identified, including:
- Physical trauma or injury
- Viral infections
- Emotional stress or significant life events
- Childhood adversity in some individuals
It’s worth noting that not everyone with fibromyalgia has experienced trauma, and there is no single cause that applies across the board. It’s most likely the result of multiple biological, psychological, and environmental factors working together.
Fibromyalgia and Other Conditions
Many people with fibromyalgia live with additional health conditions alongside it — something I know first-hand, having also been diagnosed with CFS (Chronic Fatigue Syndrome / ME).
Common physical comorbidities include:
- Chronic Fatigue Syndrome (ME/CFS)
- Irritable Bowel Syndrome (IBS)
- Migraines and chronic headaches
- Restless Legs Syndrome (RLS)
- Temporomandibular Joint Disorder (TMJ)
- Hypermobility Spectrum Disorder
- Interstitial Cystitis (Painful Bladder Syndrome)
- Rheumatoid Arthritis, Lupus, and Ankylosing Spondylitis
Some of these conditions coexist with fibromyalgia; others can produce overlapping symptoms that make diagnosis more complex.
Mental health is affected too. Living with chronic pain takes a real toll, and it’s common for people with fibromyalgia to experience anxiety, depression, persistent low mood, or emotional exhaustion. These aren’t the cause of fibromyalgia — but they often develop alongside it, and they deserve just as much attention.
Neurological and Sleep Symptoms
Beyond pain and fatigue, fibromyalgia can affect many other areas of daily life:
Cognitive symptoms often include fibro fog, memory difficulties, trouble concentrating, difficulty finding words, and heightened sensitivity to light, noise, touch, and temperature.
Sleep problems are among the most common — and most disruptive — aspects of the condition. Many people experience non-restorative sleep, frequent waking, and restless nights. Waking up feeling as tired as when you went to bed is something a lot of us will recognise immediately.
The Challenge of Living With Fibromyalgia
One of the hardest things about fibromyalgia — beyond the symptoms themselves — is that there’s no definitive test to point to. That can make the journey to diagnosis long and demoralising, and it can make it harder to feel believed by those around you.
But fibromyalgia is a recognised medical condition. It affects millions of people. And slowly, awareness is growing — which means more people are accessing support, management strategies, and a better quality of life than those who came before us.
That’s what Versus Fibro is here for.
What’s Next?
Understanding fibromyalgia is the first step — but it’s only the beginning. In the next article, we look at the treatments, management strategies, lifestyle changes, and practical techniques that can make a real difference.
Read next: Fibromyalgia Treatment and Management – What Actually Helps?
