Being in constant pain, and so fatigued that even the simplest everyday tasks become mammoth challenges is bad enough.
For many people with fibromyalgia, however, these things are only part of the battle – often one of the toughest things to deal with is the lack of understanding.
“With chronic fatigue-type conditions, sometimes other people will say, ‘Oh, well I feel tired sometimes too, you just have to get on with it’,” said Dr Kim Lawson, from Sheffield Hallam University’s Department of Biosciences.
“They don’t appreciate the severity of it.”
And fibromyalgia can be extremely severe, to the point that even normal or soft touch can cause significant pain.
Simple movement can feel unbearable, while sitting down can prove excruciating too.
However, fatigue is usually what causes most problems, and many people are forced to give up jobs and hobbies and change their lifestyles.
The condition affects an estimated two million people in the UK, but it’s believed that only 20 per cent have been formally diagnosed.
“Because of the complexity of symptoms, and because there are no simple tests - there’s not a blood test or X-ray or anything like that – it is really difficult to diagnose,” said Dr Lawson.
“So about 80 per cent are in the wilderness, trying to get diagnoses, or misdiagnosed with something completely different.”
On average it takes seven to eight years to get properly referred and diagnosed.
Dr Lawson added: “I think the major thing with fibromyalgia is the general lack of awareness.
“You look at the vast majority of people with fibromyalgia and there doesn’t seem to be anything wrong with them, it’s invisible.”
One factor is the nature of the symptoms.
Widespread chronic pain and fatigue are common, while sleep disturbances, trouble concentrating and confusion, dizziness, stiffness and headaches, can also occur.
“Fibromyalgia was only really clearly recognised and defined at the beginning of the 90s, so we’re only looking at 20 to 25 years – that’s no time at all,” he said.
“If you look at things like depression, it took a very long time before we even started to accept that depression really did exist.”
Researchers are making progress in identifying the root cause of the condition, he continued.
“There’s been some good stuff coming out of Spain where they’ve demonstrated clear genetic differences between people with fibromyalgia and those without.
“And major strides have been made in the last few years with evidence demonstrating alterations in people’s biology, changes within the brain and spinal cord.”
Some people may have a genetic predisposition to the condition, and events – or extreme stresses on the body – such as surgery, trauma or infections may act as a trigger.
The need for more effective treatment is the focus of this year’s National Fibromyalgia Awareness Week, which runs until Sunday.
Coping techniques, which may include ‘talking therapies’ like CBT, and reducing stress, play a part, as well as exercise, which boosts endorphins.
Some patients have reported success with alternative therapies such as acupuncture and hydrotherapy, but their true effectiveness is doubted by some.
Funding for such therapies is often hard to come by on the NHS, making it difficult for patients to afford, especially if they are struggling to stay in work.
“I know people with fibromyalgia who hold down full-time jobs, and who horse ride,” said Lawson.
“But they haven’t done these things overnight, they’ve had to build up to them.”
Visit the Fibromyalgia Association UK’s website, www.fmauk.org, for more details.
Illness triggered by stressful events
Fibromyalgia is a long-term condition that causes pain all over the body. Other symptoms can include fatigue, muscle stiffness, difficulty sleeping, problems with mental processes and headaches.
The exact cause of fibromyalgia is unknown, but it’s thought to be related to abnormal levels of certain chemicals in the brain and changes in the way the central nervous system processes pain messages.
In many cases, the condition appears to be triggered by a physically or emotionally stressful life event.
Anyone can develop fibromyalgia, although it affects around seven times as many women as men.
The condition typically develops between the ages of 30 and 50.
Treatment tends to be a combination of medication, talking therapies and lifestyle changes.