In March 2023, 22-year-old trainee solicitor Ivy Ganguly was climbing the Atlas Mountains in Morocco - a trip meant to be invigorating, after years of law school.

On the way down, she developed a fever that wouldn’t go away.

‘I don’t feel like I ever recovered,’ says Ivy, from Stratford in London. ‘It’s like my body just shut down after that.’

By the time Ivy returned home days later, pain spread through her body. Even light pressure on her back or ribs felt as painful as a broken bone.

‘It was so painful I couldn’t bend to empty the dishwasher. even sitting or lying down hurt,’ she says.

‘I couldn’t take public transport because I was terrified someone would bump into me – so I’d take taxis.’ Her employer was fortunately understanding and allowed her to work from home on ‘bad days’.

Some nights the pain was so unbearable she was rushed to hospital by her partner, Adam, to get stronger pain relief.

She recalls: ‘The pain became a constant in my life. Some days it would be shooting pains which would leave me in tears, other days it would be dull aches that would persist all day – sometimes it would feel like a weighted blanket was on top of me and even the slightest movement felt like a whole workout.’

The pain was joined by crushing fatigue and sleepless nights.

‘I couldn’t sleep properly for months,’ she says. ‘It felt like my body never rested.’

At the time, in October 2023, Ivy was preparing for her solicitors qualifying exam. She pushed through constant pain and fatigue, but ‘could barely concentrate; my hands were shaking from fatigue’, she says.

She passed, but the effort came at a huge physical and emotional cost.

‘After the exam I couldn’t do anything for weeks,’ she says. ‘I was in bed most of the time – my body just gave up.’

‘I stopped seeing friends. I remember not knowing how to respond when someone would ask me how my weekend was, because it was always the same – me rotting on the couch unable to find the power to do anything.’

Ivy’s GP initially told her it was probably her hormones, and that she should rest and drink plenty of water.

After two months back and forth and still struggling with her symptoms, she was finally referred to an NHS rheumatologist (a specialist in conditions affecting the joints, muscles and bones). He diagnosed fibromyalgia.

‘He said there was no cure; just to keep exercising and sleep well,’ she recalls.

‘But he didn’t explain what it was or what causes it,’ she says. ‘That was the moment I started to feel invisible.’

Fibromyalgia is a long-term condition that causes widespread pain, exhaustion and problems with sleep, memory and concentration.

Around one in 50 Britons is estimated to suffer from it, but in some ways Ivy was lucky, as only a quarter of those affected are diagnosed: and on average, it takes about three years to get a diagnosis, according to research presented at a conference last week by the University of Aberdeen.

Partly that may be because symptoms can fluctuate and overlap with other illnesses – such as chronic fatigue syndrome, arthritis, thyroid disorders or depression – and there is no single blood test or scan that can confirm it, meaning many people are passed between doctors and specialists for years before fibromyalgia is recognised.

Professor Gary Macfarlane, director of the Arthritis UK/MRC Centre for Musculoskeletal Health and Work at the University of Aberdeen, says fibromyalgia can develop after physical or emotional stress or when the body’s pain-control systems become oversensitive.

‘The nerves that carry pain messages keep firing when they shouldn’t, and the brain’s ability to quieten them is weakened – it becomes long term when the reprogrammed nervous system gets stuck in this way.’ As a result, the body’s alarm system on stays high alert, so even light touch or mild cold can feel painful.

In Ivy’s case, she believes, several previous bad bouts of Covid – each leaving her exhausted for weeks – followed by the fever in Morocco, triggered her fibromyalgia. Professor MacFarlane says that ‘any emotionally traumatic medical event could be relevant – and infections could be a trigger, but the evidence to support this is not strong’.

Under guidance from the Royal College of Psychiatrists and Royal College of Physicians, doctors diagnose fibromyalgia based on four features: widespread pain for at least three months, multiple tender areas, fatigue or poor sleep; and no other condition to explain the symptoms.

But there’s still a lot of confusion and misconception about fibromyalgia, driven by the lack of understanding what causes it.

A 2025 survey found that some GPs and other clinicians – including nurses, physiotherapists and hospital specialists – still feel unsure about diagnosing fibromyalgia, while some held ‘unhelpful views’, believing it is driven by anxiety rather than physical changes in the body’s pain system.

Des Quinn, chair of Fibromyalgia Action UK, says this stigma leaves many suffering needlessly: ‘We’ve had health professionals admit that they don’t believe the condition exists. That’s how deep the stigma runs. Fibromyalgia might not kill, but it can destroy lives.’

He says the condition has left people he knows bedbound and needing care staff visiting daily. ‘Others have to give up work, left feeling isolated and in constant pain.’

But two large international studies this month may at last offer new explanations for the cause of fibromyalgia – and, experts hope, could help doctors recognise fibromyalgia more readily.

The studies, by Mount Sinai Hospital in Toronto and Yale University, assessed more than a million patients combined and found more than 40 genetic variants linking fibromyalgia to abnormal pain processing in the brain and nervous system.

Professor Macfarlane says the latest research is helping doctors understand the biological mechanisms involved in fibromyalgia and could, in time, lead to new treatments.

But for now treatment remains a postcode lottery.

Analysis of more than 100,000 NHS health records by the ongoing PACFiND project – a national research programme run by the University of Aberdeen, which maps how fibromyalgia is diagnosed and treated across the UK – found that some areas offer joined-up clinics where physiotherapists, psychologists and pain specialists work together, while others provide little beyond painkillers.

‘There is no cure - therapies aim to limit the effect of symptoms on quality of life,’ says Professor Macfarlane.

The most effective treatment approaches, he adds, are not painkillers alone, but those that combine movement, education and psychological support as well.

‘It’s about helping people understand their condition, pace activity and build strength gradually,’ he explains.

Moving regularly – even gentle walking or stretching – helps retrain the nervous system to see movement as safe, reducing the body’s overreaction to pain. Strength work and stretching also stop muscles from weakening, which can make discomfort worse and increase fatigue, he explains.

He adds that talking therapies such as cognitive behavioural therapy (CBT) can help people retrain how their brain responds to pain.

‘In one of our trials of talking therapy and personalised exercise, a third of patients said they felt better after the course of therapy – an effect which persisted for up to two years,’ says Professor Macfarlane.

He explains: ‘When pain becomes long-term, people often stop moving because they’re frightened of making it worse.

‘That can actually heighten pain sensitivity. CBT helps people understand that pain doesn’t always mean damage and teaches ways to calm the body’s stress response.’

Des Quinn adds: ‘There is evidence that increasing activity helps people with fibromyalgia. They are advised to start slow and make small increases over time while listening to their body.

‘Meanwhile, we know stress can make pain feel worse and CBT can equip people with techniques that reduce its impact.’

But Professor Macfarlane notes that access to these therapies is limited: waiting lists are long and few therapists are trained to treat fibromyalgia patients.

After nine months of constant pain, Ivy gave up on the NHS and saw a pain specialist at the London Pain Clinic.

He prescribed the antidepressant amitriptyline, used in low doses to calm over-active pain nerves. ‘Within hours, the areas that used to hurt stopped hurting,’ she says.

Once she started medication, ‘I was able to sleep again for the first time in a long time’, she says - a turning point that made the pain easier to manage.

Gradually she began short walks, then gentle cycling.

Six months on she’s now able to complete 45-minute sessions on a Peloton bike and weekly reformer pilates, a form of resistance exercise using a sliding frame.

‘It’s slow progress, but I’m stronger,’ she says. ‘When I’m in a class with healthy people, I feel normal again.’

Fibromyalgia still limits her life: many weekends she spends recovering from the week’s work.

‘As a young woman, it’s isolating,’ she says. ‘Most of my friends are out partying – I’m resting in bed. But you just learn to do things differently.’

Work has become more manageable thanks to small adjustments, and she now paces herself carefully, planning her week around energy levels and spacing out demanding tasks to avoid flare-ups.

‘I know I’ll never be 100 per cent – but I’m in control again,’ she says.

‘People still think fibromyalgia is in your head. It’s not. The pain is real, and the lack of belief makes it worse.’