Fibromyalgia sufferer: "It's like having 20 spoons of energy to use each day"

Fibromyalgia is a chronic long-term condition which causes pain for millions but is poorly recognised and under-researched, says Jo Waters

Kirsty Young’s decision to take a break from Desert Island Discs last summer because of her struggle with fibromyalgia put the little understood condition into the spotlight.

But the BBC Radio presenter isn’t the only famous name to battle this long-term illness.

Lady Gaga is another high-profile fibro sufferer. The singer was so badly affected she had to cancel the last 10 dates of a world tour last year.

And actor Morgan Freeman has also spoken about coping with the condition’s all-over body pain.

A recent Parliamentary report estimates that almost two million Brits have fibromyalgia, which is most likely to strike between the ages of 20 and 50. And women are seven times more likely to be affected than men.

Symptoms include increased sensitivity to pain, fatigue, muscle stiffness, difficulty sleeping, cognitive and memory problems, headaches and Irritable Bowel Syndrome.

Then there’s pins and needles, a burning sensation on the skin, leg cramps, restless legs, tingling and depression. Pain can be experienced all over or in specific areas, and these can change.

‘Exercise made me well again’

Anjie Mailey, 49, an artist and special needs worker from East London, has had fibromyalgia for 15 years:

My symptoms started with unusual aches and pains – if anyone touched me lightly it felt as if I’d been punched.

I was exhausted, as if my muscles had no energy supply, and my brain slowed right down. I’d forget things all the time. I later learned this was called fibro fog.

It took about three years to get a diagnosis. I was back and forth to the GP having tests to rule out conditions including lupus and MS but they all came back negative. I was eventually referred to a rheumatologist who diagnosed fibromyalgia.

My breakthrough came when I was referred to a fibromyalgia self-management course at Great Ormond Street Hospital in London, where we had group therapy, gentle exercise classes and were taught how to manage symptoms.

Exercise was really the last thing I felt like doing as I was overweight, unfit and in so much pain I was using two walking sticks, but I decided to join a gym.

It hurt at first, but I took painkillers and pushed on. I’d ache all over the next day, but slowly built up my muscle strength and stamina, and my muscles hurt less.

Soon I was fit enough to do karate and women’s boxing. I also attended a slimming club and I’ve lost seven stone.

I was told you have 20 spoons of energy to use up in a day and each activity will cost you one of them.

The challenge is to plan how you will spend that energy. My pain is still there, but I’ve learnt to manage it and take control now.

What causes it?

The condition is now recognised as a malfunction of the pain threshold system. It’s thought a fault develops in the way pain signals are processed, although what triggers this is still unclear.

Studies using brain imaging have found growing evidence that suggests central nervous system involvement.

“Patients become oversensitised to external stimuli and their pain threshold goes right down – so just being lightly touched can feel very painful,” explains Dr Rod Hughes, consultant rheumatologist at St Peter’s Hospital in Chertsey, Surrey.

“Fibromyalgia is often seen as the result of some sort of stressful event, such as surgery, an accident or a big emotional trauma, such as divorce.

“Often, there’s been a stress flashpoint and sufferers may have a history of migraines or IBS-type symptoms.”

Difficulty in diagnosis

As so many symptoms overlap with other conditions, and there are no definitive diagnostic tests, it can take some time – several years, in some cases – to get a diagnosis.

Hazel Borland, of the UK’s largest fibro charity Fibromyalgia Action UK, says whether patients get to see a sympathetic doctor or not is down to their postcode.

“Lots of patients tell us their symptoms are dismissed or they’re told they’re depressed,” she says.

“Although that may be true, they’re often depressed because of their fibro symptoms.

“Patients also report being passed from pillar to post between GPs and specialists, and there are only a handful of specialist fibro clinics.”

She adds: “The impact of fibromyalgia is underestimated. If people feel unsupported, this can lead to depression and isolation – and even suicide.”

Hazel recommends seeking a second opinion or asking for a referral to a centre that specialises in fibromyalgia.