Page last updated at 12:51 GMT, Friday, 7 August 2009 13:51 UK

Hidden disorder 'stripped me of life'

Lorraine Smyth speaks to Marie-Louise Connolly

Around 70,000 people in Northern Ireland are affected by a chronic disorder which many say is not being properly recognised by health professionals. Fibromyalgia can cause severe pain and fatigue but sufferers say it can take years to be diagnosed.

BBC Northern Ireland health correspondent Marie-Louise Connolly looks at the disorder and the calls for more research and a better understanding of the illness.

At her home in Portstewart, Lorraine Smyth sits on the sofa. At her side lie her crutches and in the family car, her wheel chair which allows her some freedom.

Three years ago when she was 30, Lorraine was diagnosed with fibromyalgia.

What started off as back pain a decade ago has progressed into a syndrome for which there is no cure.

She has short blond hair, no trace of make-up and her face is etched with pain.

"I'm in agony sitting up, even lying down in bed. It feels as though my skin is burning, crawling with insects or something inside. It feels like a burning torch is on my shoulders or at its worst, as if I'm being stabbed. There are days I want to cut my arms off they are so sore," said Louise.

Fibromyalgia, or FMS, is a complex chronic pain disorder that affects around 70,000 people here.

It can grip a person physically, mentally and when they are confined to home, socially.

Hard to identify

Alan, Lorraine's husband, is her main carer
Alan, Lorraine's husband, is her main carer

It is regarded as a syndrome and not a disease because those who have it normally have a collection of symptoms that are not easily identifiable.

It is almost like ME which, for a long time, was not accepted as a genuine medical condition.

Lorraine, who has three children, says her condition has stripped her of her life.

"I can't be a mother or a wife - I am nothing but a shell. I lost my business and I can no longer work." she said

Her husband Alan is her main carer. He gave up studying for a degree in physiotherapy at university to look after her.

"It's terrible, really terrible. I am now a full-time carer to my wife who is my priority. I look after the children, the house and have to sit and watch Lorraine suffer," said Alan.

"I read constantly about the illness, trying to find new information."

Less than 10 miles away and in Coleraine, Margaret Peacock runs the local FMS helpline.

From her living room she answers calls from fellow sufferers.

She was diagnosed with the condition in 2000. Her hands and mouth shake gently, and her pained expression reminds me of Lorraine.

"It feels like a chronic flu that never, ever goes away. The pain is dreadful. It gets under your very nails. The headaches mean I can't sleep well and it drags me down mentally." said Margaret.

Long diagnosis

Margaret Peacock runs the local FMS helpline
Margaret Peacock runs the local FMS helpline

Margaret explained that the diagnosis can often take years. She was referred to several consultants over a period of four years.

Six weeks ago she organised a local conference with speakers from America.

"They didn't know what was wrong with me. For a long time they thought it was arthritis.

"They gave me anti-depressants but that's not the answer.

"We need GP's who know what it's about and can make the proper diagnosis." she said.

"Because there are so many different symptoms you are passed around different hospital departments.

"They all take blood tests, but sure that can take six months waiting on an appointment."

The BBC was unable to find a local consultant or GP who was willing to be interviewed.

While several were on holiday, one doctor did admit a lack of awareness about the condition in Northern Ireland.

Some sufferers turn to alternative therapies.

Jane McClelland is a nutritionist at Framar Health on the Lisburn Road in Belfast. She treats about six people with FMS a month.

"When they come to us they are at the end of their tether. They have gone as far as they can with the health service and then turn to us. "

"We offer advice on diet and gentle exercise. While there is no cure, there are methods of treating it."

Most of the research into this condition is happening in America.

Scientists are examining whether it is hereditary and if the condition is neurological.

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