The one thing that I want from life is just to be free from pain

And maybe just for once I could be my old self again

I want to walk just by myself and run through all the trees

To play with my grandchildren and paint with them on my knees

Poetry is one of the few things Julie Bull can still do. Even though it's uncomfortable sitting at the computer for a long time, at least it means the 49-year-old can get some of her feelings out.

Fibromyalgia syndrome has robbed her of a job she loved, precious chances to play with her grandchildren – even the ability to wash her own hair.

Julie, from Belle Isle, first became ill in 2002.

"I started with severe chest pains and my first thought was a heart attack," she said.

"I felt as if every time I moved I tore something. To be honest I thought I had some sort of cancer. The pain was so bad and nobody could give me any answers.

"It built up over a period of six months and started to take over my life. I wasn't sleeping and I lost a lot of weight."

Eventually after various blood tests, she was diagnosed with arthritis.

But though that had left her with problems, it wasn't the only cause of the pain – medics later diagnosed fibromyalgia too.

Julie had never heard of it and was baffled by the diagnosis at first. However she read up on the condition and slowly found ways to try and cope.

"It's what I would call debilitating," she said.

"They say it's not progressive but I was not this bad last year.

"You learn to cope physically but mentally it is difficult."

The former nurse was forced to retire from her job as a home carer for Leeds City Council's Social Services Department because of the burning pain she suffers.

"What are simple tasks for most people are so difficult," she said.

"I can't ride a bike, I can't go swimming. I used to walk five miles a day and I used to garden, which I absolutely loved.

"I can't wash my own hair – my daughter does it for me.""

She uses crutches but has also recently got an electric wheelchair to give her a little more freedom.

"It's like my whole world has been turned upside down.

"At first you think it's only for a while, they will give me some medication, but it's not like that."

Fibromyalgia causes tiredness and pain in muscles and ligaments and can also result in various other symptoms, especially poor or disturbed sleep. Sufferers can be affected to varying degrees – some can carry on with normal life while others, like Julie, find themselves severely curtailed.

Because the symptoms are similar to several other conditions, diagnosis can be difficult and lengthy. It does not help that relatively little is known about the condition, even what causes it.

It often develops after a trigger like an illness or injury and other theories on its cause include a lack of the body chemical serotonin, emotional trauma or even disturbed sleep patterns themselves.

There is no cure for fibromyalgia – treatment is based around purely controlling the symptoms. Julie is on medication, but some of it comes with severe side effects.

She is lucky because her three daughters live locally and provide lots of support. She tries to stay positive and her four grandchildren also bring her much joy, though she has to remind them to give her "gentle hugs" so as not to hurt her.

Julie is keen for more awareness of fibromyalgia. She tells of comments made by passers-by asking "what've you done then?" in reference to her wheelchair or crutches, so she has to explain it is a chronic condition and not something she will recover from.

"I just want people to become more aware of it and not judge us," she said.

"People used to think I had been drinking."

Recently the illness came into the public sphere with the suggestion that former glamour model Jo Guest could be suffering from it.

Known previously as a blonde bombshell, she appeared on television earlier this year looking a shadow of her former self.

She described how she'd been suffering from a mystery illness for over a year and doctors were baffled.

Following the show, hundreds of viewers rang in with suggestions about what it may be – and most said fibromyalgia.

Since then Jo has been diagnosed with the illness and is now receiving treatment.

The world's most famous nurse may also have had fibromyalgia.

In her later life Florence Nightingale became ill and was eventually bedridden by a mysterious illness.

It is unknown what that might have been, but speculation is that it was something like chronic fatigue syndrome or fibromyalgia. Now International Fibromyalgia Awareness Day is marked on her birthday, May 12.

Julie is hoping this year's day will make the public and the Government take fibromyalgia more seriously so a cure can soon be a realistic prospect soon.

"I want to make the Government aware of how badly people can suffer," she said.

"How can they do research unless the Government allows money to be put into it?"


For more information about fibromyalgia, log on to www.fmauk.org.uk.


Symptoms of fibromyalgia

Main symptoms are joint pain and fatigue.

Other symptoms can include:

Non refreshing sleep

Waking up tired and stiff

Headaches

Irritable bowel syndrome

Cognitive disturbances including lack of concentration and mixing up words

Clumsiness and dizziness

Sensitivity to changes in the weather, noise, bright lights, smoke and other environmental factors

Allergies