Fibro-what?
Reproduced from Issue 106 of Arthritis Today
Fibromyalgia was registered as a bona fide medical condition
by the World Health Organisation seven years ago. Yet it is still
something of a medical mystery.
Ten years ago ME was widely dismissed "yuppie flu". Now it's generally recognised and accepted by even the most grudging of medics as part of genuine medical condition called chronic fatigue syndrome.
These days fibromyalgia – a condition of widespread, chronic muscle pain, fatigue, and sleep loss – seems to have taken on the mantle of the disease that raises the most sceptical eyebrows. Sufferers are frequently told by doctors: "It's all in your head," or even: "It's your age."
Naturally, sufferers who often feel so aching, stiff and exhausted that they hardly have the energy to get out of bed don't like to hear this; they want sympathy, treatment and understanding.
But GPs – the ones who accept the existence of the condition that is – often refer to people with fibromyalgia as heart-sink patients, because they know there is nothing they can do for them.
Two firmly held views on either side of the great fibromyalgia debate. On the one hand – the cry from patients – why does no-one understand what we're going through? On the other, from the medical profession, the suspicion that because there is no known physical cause for fibromyalgia, that patients should be seeing a psychiatrist, not a doctor.
Fibromyalgia sufferer Catherine Bacon with daughter Hollie
Fibromyalgia patients will recognise Catherine Bacon's story. Diagnosed recently, she finds it impossible to find relief. "I've been in agony for 24 hours a day, for nearly a year," she told Arthritis Today. "I take painkillers around the clock, and take an tricylic drug at night but they do nothing. My husband bought me a TENS machine, but that doesn't work either."
She sleeps on the sofa because she can't manage the stairs, and can't walk for more than 50 yards without feeling in pain and becoming tired. Catherine is 25 years old.
"I can't play with my seven-year-old daughter because I hurt and am so lethargic all the time, " says Catherine, who comes from Alfreton in Derbyshire. " I can hardly do any housework. My mother does all my ironing for me, but the rest goes to pot. I'm only 25 years old but I feel 85."
Bob Stewart has heard this sort of story all too often. After two years of being passed from specialist to specialist – "I think I saw everyone but a gynaecologist" – he was finally told, ten years ago, that he was a typical case of fibromyalgia.
Now chairman of the self-help charity the Fibromyalgia Association, he believes there is still a good deal of prejudice unfairly directed against the condition. "It's not taken seriously because nothing shows up in standard tests, and because of the way it behaves – fibromyalgia is a very up and down condition and affects different parts of the body," he says.
"People are told it's in their head. And because it's a predominantly female condition there is a tendency to link it with age, or because women are menopausal, or pre or post menopausal! It's all too convenient to label it a 'female thing'. But nothing could be further from the truth. They say it's connected with depression. Well, after years of being from shunted from consultant to consultant people do get depressed. But that's a result of a lack of diagnosis, not the cause of fibromyalgia."
Current arc research at the Epidemiology Unit at Manchester University offers some interesting insights into the possible causes of fibromyalgia. In fact, early results of a five-year study of 2,500 people in the south Manchester area confirms that there may indeed be some psychological factors involved with the its onset. And there appears to be no organic, physical cause.
"We are trying to gain an understanding of what lies behind the onset of symptoms by following a large group of people who don't have fibromyalgia over two to four years to see who will develop symptoms of the condition, and what it is that makes them different to those people who remain healthy," explained Dr Gary McFarlane, professor of epidemiology at the EU.
The researchers have found that people who develop symptoms of fibromyalgia appear to have a history of high levels of stress and anxiety. "These appear to be related to what we call somatic symptoms, which means people expressing their distress through bodily symptoms, in the same way that children who are worried about something say they have tummy pain," added Dr McFarlane.
One of the most interesting revelations the study has unearthed is that people who develop fibromyalgia have often had bad experiences in their childhood. " It could have been an illness in the family, they may have been separated from their parents, or even been the victims of child abuse," said Dr McFarlane. "This is a very difficult area of research, and we need to do more work on this." The Manchester research will continue for another two years.
What both sides of the great fibromyalgia divide seem to agree on is that the condition is sparked off by some kind of trauma – either physical trauma such as a road accident, or an emotional shock. In Catherine Bacon's case, her symptoms developed shortly after the death, a year ago, of her younger brother, of cystic fibrosis. Bob Stewart's problems began after the suicide of his business partner.
Sleep disturbance may also be a cause as well as a symptom. Studies in the past have shown that volunteers deprived of deep sleep over a period of time developed fibromyalgia symptoms.
Dr Frank McKenna, consultant rheumatologist at Trafford General Hospital in Manchester, believes that people who develop fibromyalgia after a physical trauma are more likely to recover. People who don't get better may need long-term counselling and support.
Dr McKenna's advice to patients is to sleep in a narrow soft collar to give their neck some support, to go swimming regularly, and take a low-dose tricylic (anti-depressant) drug at bed-time.
"It's difficult to treat some patients who have either psychological problems or stress or depression which manifest as aches and pains," he added. "There are a lot of people who have a psychological or depressive illness who can be labelled as having fibromyalgia who may never get better unless the problems are treated.
"The reason why so many people are referred to so many different consultants is because they may have chronic abdominal pain, or chest pain as well as muscle pain. It's not just rheumatologists who see fibromyalgia patients."
Ten years after his fibromyalgia was diagnosed Bob Stewart has improved, although he has not been able to go back to work. "I'm much better than I was, not because I don't have any more symptoms, but because I understand how the thing works. If you accept you have got the condition then you can mould your life around it," he says. He attends a pain clinic in the West Midlands, which keeps his symptoms under control, and can manage his condition.
If there is one thing that he could change it would be people's attitude to fibromyalgia. "What we would like to see is more understanding of the condition," he says. "Just an understanding of how difficult fibromyalgia really is."
