BEHIND THE POKER FACE

Showing her trademark courage and character Gaga has shared her story with the media, shedding light not only on her own challenges but also becoming a beacon of hope for others. She’s spoken candidly about her experiences, saying “Chronic pain is no laughing matter.”

Gaga has had to confront the unpredictability of her illness, sharing, her heartbreak at having to cancel shows because she was in so much pain.

Despite the toll on her physical and emotional wellbeing, Gaga’s unwavering spirit shines through.

She’s adopted a fitness routine (exercise has a role to play in managing symptoms) and has become a passionate advocate. Her Born This Way foundation, has spearheaded initiatives aimed at supporting research, providing resources and encouraging self care.

Her resolve and support for others perhaps summed up best by her rallying cry, “I’m just trying to change the world, one sequin at a time.”

Why we need to listen (page 20) and Anne’s story (page 21).

WHAT IS FIBROMYALGIA?

Fibromyalgia syndrome is a long term condition which causes widespread pain and tenderness over your body. It is thought to be caused by over sensitivity within your nervous system (brain and nerves) which results in increased pain messages to your body.

OTHER SYMPTOMS CAN INCLUDE:

• Poor sleep

• Poor concentration or mental processing – also known as “fibro fog”

• Fatigue.

• It’s estimated that somewhere between 1.8 million and 2.9 million people in the UK have fibromyalgia

• It most commonly develops between the ages of 25 and 55, although children can also get it. It appears that more women are diagnosed with fibromyalgia than men.

WHAT CAN I DO ABOUT IT?

Your GP can talk to you about diagnosis and treatment. Getting enough sleep, exercise and a healthy diet will all help.

There’s a wealth of information at: merseycare.nhs.uk/fibromyalgia

WHY WE NEED TO LISTEN

Fibromyalgia is a long term condition that can cause widespread pain in the muscles, tendons and ligaments. It’s thought to affect one in 25 people.

Research abounds on what causes fibromyalgia, but no one really knows. The irony is that sufferers may be fine one day and in agony the next. It’s difficult to diagnose. Even experts struggle to make sense of the disease and services can fall short of what people need; they can feel abandoned.

Consultant physiotherapist Ruth Sephton leads an innovative service in St Helens, Merseyside.

“Because symptoms vary, people are often passed from one service to another, sometimes for years, without a diagnosis,” she says. “Even when they are diagnosed, all too often they’re discharged immediately and told to exercise.

“The person is far from that point, both mentally and physically. Exercise is important in managing fibromyalgia, but they need guidance and personalised care that considers what’s most important to them. We need to tackle other things that might make symptoms worse, like stress, financial difficulties and social isolation.”

Clinicians and patients have together designed a new fibromyalgia ‘pathway’ that looks at the whole person. Now, when someone is referred by their GP, they are diagnosed rapidly and the musculo skeletal team will work with them to develop a support programme. Dedicated fibromyalgia clinics have been set up to help the team learn more about the person.

“It may be that someone has been unable to work because of their symptoms and has financial problems. It could be that they’re feeling isolated. We would link with social prescribers and community services who can meet their specific need.

“There’s no magic pill to make this condition go away. But now we’re offering what people tell us may help them to live their best life. Most importantly, they feel someone is listening.”