A CONDITION causing a hidden agony but not often talked about has been hitting the headlines thanks to an international star.

Fans of Lady Gaga have been waiting in anticipation for the release of a documentary on September 22 which will document her struggle with chronic pain and how she has learned to live with the disease.

Fibromyalgia is a disorder that causes musculoskeletal pain throughout the body and profound fatigue and is a debilitating and incurable condition.

While it may be gaining international attention because of the Monster hit maker, in Bolton one suffered has been on the path to raise awareness for a long time.

Simon Stones is a patient advocate and has been making it his mission to raise awareness of conditions like fibromyalgia.

The 24-year-old was diagnosed with the condition at the age of 18 having already lived with arthritis and Crohn’s disease.

However, living with fibromyalgia for six-plus years has not made it any easier.

H explains: “The NHS believes one in 20 people suffer from it.

“When I was diagnosed the inflammation from the arthritis was under control but I still had a lot of muscle pain and fatigue.

“Symptoms include feeling pain all over your body, feeling completely exhausted, and there is no definitive treatment.

“Everybody suffers differently but the description is a dull, distinctive pain felt all across the body. For me that manifests itself as a really dull ache and sharp pains.

“The best description I have for it is, it feels like the plug has been pulled and you feel so heavy, like a lead weight.

“A lot of people with fibromyalgia get ‘brain fog’ – cognitive disturbance – like memory loss or getting your words the wrong way round. It is really frustrating and you have to laugh it off. Speaking to others with the condition, though, it is reassuring to know you’re not losing your memory.

“You can map a lot off symptoms you’ve suffered over the years and realise it’s because of the fibromyalgia. That can even include sensitivity to noise and sounds – once you start reading about you realise there is a lot to it!”

Sadly sufferers have struggles not only to manage the condition but also be diagnosed, as – unlike other chronic conditions – fibromyalgia is not so commonly known.

According to the NHS fibromyalgia has numerous symptoms, so no single treatment will work for all of them, and what will work for one person will not necessarily work for others.

Among the recommendations are anything from pain killers and muscle relaxants to antidepressants and antipsychotics.

Exercise has been hailed as one of the best ways of tackling the daily struggle, such as swimming, but its a huge challenge for people with chronic pain and fatigue to take on, particularly due to the lack of professional support out there for sufferers.

In Simon’s case drugs were not an option, due to intolerance to painkillers, but he has turned to activities such as pilates and yoga for help.

Some days are easier than others though, he explains: “The constant pain can vary day to day, some days you can feel better and other days you can’t leave the house. the problem is on days when you feel better you can over do it and make things worse.

“That makes it particularly hard for people who work, and it’s hard top explain.

“The pain doesn’t go away but you have to learn to manage it and plan around it.”

Due to the varying effects of fibromyalgia and the fact it is often not talked about, sufferers often find themselves isolated and judged for their behaviour – with some critics not even believing it exists.

Hence, many voices came out to criticises of Lady Gaga when she announced she had the condition, not believing that someone who can go on world tours and take to the stage every night in high-energy arena performances could also suffer with fatigue and bad health.

The loneliness felt by sufferers, particularly people of a younger age, and lack of awareness in the general public is something Simon is trying to tackle.

He adds: “With general members of the public I face difficulty. For example I was commuting into Manchester on a packed train the other day and was so tired I couldn’t stand. I asked for a seat some people ignored me, or gave me looks, while others said ‘pull the other one, there’s nothing wrong with you’. It was embarrassing and can ruin your self-confidence.

“People can struggle with employers, I have been lucky, but some others have not.

“We need to talk about it more, that’s the only way to get help. I go and talk to young people and try to encourage them to take control of their illness.”

Simon is a trustee of Fibromyalgia Action UK, a national charity supporting sufferers as well as encouraging research into the condition.

It also runs local support groups, which include groups in Bolton and Bury.

To find out more visit www.fmauk.org.