Illness is my challenge...

Amy’s art performance is insight into chronic disease suffered by Lady Gaga

IT is an illness with no known cause, no known cure and which very few people know about.

But for Amy Rosa, a diagnosis of fibromyalgia syndrome (FMS) came as a relief.

The 31-year-old had been suffering from a varied collection of illnesses over a long period and was desperate to find answers.

Although there is no set treatment for FMS, the diagnosis meant she was finally being believed that her symptoms are real.

Amy said: “GPs aren’t always trained in the symptoms of chronic illness, they aren’t always good at looking at overall patterns and tend to treat each separate ailment individually.

“It was difficult for my doctor because I was presenting with so many different symptoms but ended up having quite a good relationship because it was such a long journey to diagnosis.

“There was a relief to having a diagnosis because it meant I was being believed that there was something really wrong.”

FMS has recently been in the headlines due to two celebrities speaking out about the conditions.

In August it was announced that broadcaster Kirsty Young is to take a break from presenting BBC Radio 4’s Desert Island Discs because she has a form of fibromyalgia.

Pop star Lady Gaga also lives with the condition, which last year forced her to cancel her European tour.

She has made a documentary about fibromyalgia, a condition hard to diagnose, explain or treat.

For Amy, there is also a frustration around a lack of awareness of FME, which is an invisible disability.

She said: “It is difficult to talk about because I don’t want to start going in to all the many different things that are wrong with me – the list is so long, it’s a lot to take on board.

“The most understanding people are those who have chronic illness in the family.

“It is difficult for people to understand what it is like to be in pain all the time and to be fatigued all the time.

“I describe it as being like having a phone with a really rubbish battery. You might leave it plugged in to charge all night but when you wake up it’s still only at 17 percent and you have to make that 17 per cent charge last all day.”

In 2014, Amy suffered a head and neck injury, which was not long after followed by a serious infection in her jaw.

Her head injuries failed to heal and this set off a chain of further health problems, requiring many visits to her GP.

She also had sciatica, but her symptoms began to worsen.

‘‘ There was a relief at having a diagnosis because it meant I was being believed

For Amy, her FME presents itself in a range of symptoms.

She said: “It feels like when you’re in a dream and you feel like you’re moving but everything is a huge effort. It feels like my body is moving through treacle.

“I have brain fog – I forget words and dates and deadlines. I need to set a lot of alarms to remind me of things.

“I have deep, deep pain in my limbs, grinding in my joints and muscles as well as shooting pains.

“I have migraines and chronic fatigue and a lot of sharp nerve pain. I’m hypermobile so my shoulders and hips slip out of place.

“I’m also in a permanent state of sleep deprivation.”

FME is difficult to diagnose because patients all present in different ways.

Amy added: “It is an intricate illness that presents with different ways for