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.
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 different people.
“The pain I have got used to but the exhaustion is very difficult to cope with.”
As there is no cure, Amy looks to managing her symptoms instead, and sees a physiotherapist.
Worries about the effect of long term pain medication on her kidneys and liver have prompted her to stop taking pain killers.
As an artist, Amy is now taking part in Tramway’s Unlimited Festival, which returns for its second edition tomorrow.
She wants to give people a deeper understanding of the illness she lives with.
Amy, a Royal Conservatoire of Scotland graduate, said: “People will ask inappropriate things that make it clear the real question is, ‘Why aren’t you trying harder to get better?’
“They will suggest juice cleanses or fasts – all sorts of things. It’s difficult when people try to micromanage your symptoms.
“And I don’t want to sound harsh, I know it comes from a good place, but I know my own illness. I am an expert in my own body.
“I have had people ask if my walking stick is a fashion accessory. Or they will ask, ‘What have you done to yourself?’
“I used to take the time to explain but now I just say. ‘I’m disabled.'”
Amy has performed in Berlin, Barcelona and London but this is her first solo piece in a major event space.
Called Gallanach, the performance piece sees Amy move through a web of live copper wiring.
Over four hours she will sew weights to her clothes to demonstrate how tiring the illness is and will work with shallow bowls of water and ceremonial herb.
Amy added: “My artistic practice has always been very nurturing, very much about making people feel warm and safe, so this is very different.
“Since my symptoms started I have noticed how uncomfortable I make people feel.
“So I want to make them feel uncomfortable and give a sense of what this illness is like.
“People only see me in short bursts when they come to visit so they see me looking reasonably well.
“They don’t see me then having to lie down for 12 hours to recover.
“This performance takes place over four hours, which will be incredibly difficult.
“But I hope it gives insight into how I, and others with chronic pain, live.”
Unlimited Festival supports internationally acclaimed and emerging disabled artists.
Cutting edge contemporary dance, visual arts, sound installation and film will be presented from Wednesday, October 17 to Sunday, October 21.
Amy’s piece will be performed from 3pm til 7pm tomorrow.