Fibromyalgia- 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, Biomedical Research Centre. “They don't appreciate the severity of it.”

Fibromyalgia (FM) can be extremely severe, to the point that even normal or soft touch can elicit significant pain. Simple movement can feel unbearable, while sitting down can be excruciating too. Fatigue is usually what causes most problems though, and many people end up having to give up jobs and hobbies and change their lifestyles.

The condition affects an estimated two million people in the UK, some 4% of the population, but it is believed that only 20% of people with fibromyalgia (FM) have actually been formally diagnosed.

“Because of the complexity of symptoms, and because there are no simple tests – there’s no blood test or X-ray – it is really difficult to diagnose,” said Dr Lawson. “So about 80% are in the wilderness, trying to get diagnoses, or misdiagnosed with something completely different.”

Often people will be going back and forth to their GP with various vague complaints over long periods of time; on average it takes seven to eight years to get properly referred and diagnosed.

This can come as a huge relief, said Pam Stewart, chair of the charity Fibromyalgia Association UK (FMA UK). “They are not a hypochondriac, or going mad!” she said.

FM is a lifelong condition and there’s no cure. Treatments are limited and Pam points out that depression is quite common. People living with chronic pain conditions are also at higher risk of suicide. “It’s estimated that 30% of people with FM have depression, although it’s not been shown whether the onset was before or after the illness. The lack of treatment would certainly add to any anxiety, but also the lack of practical support. Employers, benefit assessors, family and friends all add to the stress if they do not understand or believe what is happening,” she said.

FM affects every individual differently, but it is possible to manage symptoms quite successfully. Part of the challenge is ensuring everybody has access to useful information and services.

“What we would love to see is multi-disciplined teams, that can look at the whole person and have a joined up care plan,” said Pam Stewart.

 For more information and support about FM, visit www.-fmauk.org