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Feel our pain
Friday 12 September 2014
Feel our pain
It's only a couple of decades since fibromyalgia was recognised as an illness and there is still a long way to go in terms of awareness.
Abi Jackson speaks to those trying to lead the way.
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'," says Kim Lawson, from Sheffield Hallam University's Department of Biosciences, Biomedical Research Centre. "They don't appreciate the severity of it."
And 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 Britain and Northern Ireland, around 4 per cent of the population, but it's believed that only 20 per cent 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 not a blood test or X-ray or anything like that - it is really difficult to diagnose," Dr Lawson says. "So about 80 per cent 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, notes Pam Stewart, chairwoman of the charity Fibromyalgia Association UK (FMA UK). "They are not a hypochondriac, or going mad," she explains.
But FM is a lifelong condition and there is no cure. Treatments are limited and Ms Stewart 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 per cent 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 says.
Dr Lawson adds: "I think the major thing with fibromyalgia is the general lack of awareness."
He can see why it's so easy for this to be the case. "You look at the vast majority of people with fibromyalgia and there doesn't seem to be anything wrong with them - it's invisible. "But you walk down the road and you wouldn't be able to point out those people with diabetes or high blood pressure."
Yet, the validity of those conditions isn't constantly questioned; so what's different?
One factor is the nature of symptoms; widespread chronic pain and fatigue are the main ones, while sleep disturbances, cognitive problems - like trouble concentrating and confusion - bowel problems, dizziness, stiffness and headaches, among other things, can also occur.
Since exhaustion affects most, if not all of us, to some degree, it can be difficult for people to recognise that for some, it's part of an illness; an issue people with conditions such as ME, or chronic fatigue syndrome, have to endure too. "Fibromyalgia was only really clearly recognised and defined at the beginning of the 90s, so we're only looking at 20-25 years - that's no time at all," he says. "If you look at things like depression, it took a very long time before we even started to accept that depression really did exist."
In terms of research, progress is happening, he notes. "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, rewiring, if you like, that affects the pain response pathways."
Precisely why this happens, it's too soon to say. 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.
Earlier this year, FMA UK surveyed patients about the impact of FM. Almost 50 per cent said, overall, the treatment they received was poor, and only a small minority reported good levels of pain management.
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The above originally appeared here.
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