What is fibromyalgia and what is it like to live with the chronic pain condition?

Lizzie Thomson.

The number of people living with fibromyalgia is rising.

Figures this week showed that more and more people are being treated for the condition in many areas, including Hull, Grimsby, the North East, Huddersfield and Nottinghamshire.

But despite more people being diagnosed with the condition, many of us are clueless about what it actually is. Celebrities like Lady Gaga – who spoke about living with the fibromyalgia to Oprah earlier this week .

But the exact cause remains unknown – making it a complex and often misunderstood condition. It’s also an invisible illness, which presents various stigmas. We spoke to doctors and people living with it to find out more.

What is fibromyalgia?

Simply put, fibromyalgia is a long-term condition which causes pain all over the body. According to the NHS, it’s believed to be associated with changes in the way the brain processes pain messages. GP and pain expert Dr Paul Stillman tells Metro.co.uk: ‘It’s thought to be related to the levels of certain chemicals in the brain and changes in the way the central nervous system (brain and spinal cord) processes pain messages around the body.’

Dr Paul describes pain as the ‘the hallmark symptom of fibromyalgia.’ He says: ‘It can be felt in various muscles and soft tissues in the body, such as the back and legs, and can range from mild achiness to an intense and unbearable discomfort.’

illustration of someone clutching head

In addition to this, individuals living with the condition might experience an increased sensitivity to pain. Hayley Woodland, who lives with fibromyalgia, explains how this works.

She says: ‘All the time your brain is scanning your body for a pain, so if you burn your hand or something, it goes “ow that hurts”

. ‘But with fibromyalgia, the brain doesn’t recognise pain accurately, so it thinks there is pain when there is not or if there is a small amount of pain it thinks there is more.

‘So it creates pain, effectively.’ What is it like living with fibromyalgia? Pain can make day to day life difficult (Picture: Ella Byworth for Metro.co.uk) Hayley tells Metro.co.uk that every day is different with fibromyalgia because, much like arthritis, people living with the condition often experience flare-ups.

She says: ‘Living with fibromyalgia is a little bit like being set on fire, forced to carry a heavy backpack through mud and then getting lost in a fog. ‘Sometimes the fog clears, the mud dries and you can function relatively “normally”.

On other days, the weight of pain/fatigue/confusion is simply too much and you have to just lay down and try again the next day.

‘I used to get very frustrated by the fibro flares as they make you feel useless, but I’ve realised that the stress of feeling angry simply worsens the symptoms.’

Hayley passionately believes attitudes towards fibromyalgia need to change – especially with some people viewing it as a ‘made-up condition.’ She says: ‘This is completely untrue and extremely hurtful to hear as you immediately start doubting all your pain and seeing yourself as a lazy fraud. ‘The best people are the ones who ask you about it.

I’m more than happy for people to show an interest and ask questions – just don’t then turn around and tell me I’m “just tired” or should eat more turmeric!’

How common is it?

Dr Diana, who works for online doctor service Doctor4U, points out that fibromyalgia affects seven times more women than men.

Symptoms usually emerge between the ages of 30 and 50. But the condition can come on at any time – which means it’s possible to appear in children and the elderly.

Dr Paul adds that it’s actually more common than we may think. He says: ‘Research indicates it is relatively common with estimates suggesting that it affects around 1 in 20 people.

However, sufferers do not necessarily seek advice on this condition, and even if they do, fibromyalgia can be difficult to diagnose so the number of sufferers could be more than the estimates.

‘The condition is difficult to understand even for healthcare professionals, which can lead to underdiagnosis.’

It’s also a condition that can develop suddenly – sometimes this can be down to a significant or traumatic life event.

He adds: ‘Changes in brain chemicals and changes in the way pain messages are processed can be triggered quite rapidly by a physically or emotionally stressful event such as an injury or infection, giving birth, surgery, breakup of a relationship or death of a loved one.’

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