It is a disease that more and more Australians are being diagnosed with every year. It’s incredibly debilitating: sufferers often can’t leave bed, go to work or have normal social lives. But it’s also invisible: it’s a disease that strikes at the core of victim’s bodies, at the joints and nerves, resulting in often crippling pain. Fibromyalgia is affecting a large swathe of Australians, but community activism is making a positive dent in this relatively unknown disease.
Michelle Greenwood was diagnosed with Fibromyalgia Syndrome – called Fibro in the disease’s support community – eight years ago, an event that lead her to the path she’s on now.
“They said I had probably had it since childhood,” she said.
“I was in and out of hospitals all the time growing up. They used to tell me all the time they were growing pains, because there was no other why to describe what was wrong with me.”
Ms Greenwood, although still afflicted by tiredness, chronic pain and other affects of Fibromyalgia, seems happy: she is warm, friendly and open in talking about the disease.
It’s clear a lot of this comes from coming to terms with her illness, and also being there for people who are going through the same trials.
She has started Fibro and Us, a Fibromyalgia support group with bases in Mandurah, Rockingham, Baldivis and Kwinana.
The group’s attendance has exploded since the awareness of Fibromyalgia started making its way into mainstream knowledge, and doctors have become more likely to detect symptoms.
“Ten, 15 years ago, no-one was diagnosed, it was a mystery,” Ms Greenwood said.
“Now hundreds of people are diagnosed, especially women. It’s a really nerve-wracking experience; what do you do when you;re told you have this debilitating disease you’ve never heard of?
“That’s why we have the group. if even to talk about it between ourselves, that’s a huge step in overcoming it.”
What is Fibromyalgia?
Fibromyalgia itself is hard to pin down. Like modern ailments such as depression. Fibromyalgia is less a definite condition and more a collection of various debilitating symptoms. Pain is the most common element of the disease – victims often suffer stiff, seizing joints and muscle problems.
But there are many other factors associated with the disease. Nerves are often affected, leading to, again, chronic pain, but also numbness, loss of fine motor functions, edema, and in some cases paralysis.
For many years, the issues associated with Fibromyalgia were often diagnosed incorrectly: as Arthritis, nerve injuries or injuries.
Because of it’s relative newness on the scale of diseases, there’s also very two prominent problems: there is no known cause, and no known cure.
It is only in the last decade Fibromyalgia has become a widely recognised disease in Australia. But for many, recognition of the place they find themselves in is still an uphill battle.
“I’ve probably been to six doctors over the last eight years, and I think about half of them didn’t think there was anything wrong with me,” Ms Greenwood said.
“I was sent to Fremantle Hospital to take part in the STEPS program, where I was eventually diagnosed. I had blood tests to rule everything else out – Multiple Sclerosis, Arthritis, those sorts of things.
“But when you get a diagnosis of Fibro, you’re not just diagnosed with Fibro. There’s all the underlying conditions associated with it as well: the lethargy, the depression, edema, the list goes on.”
An uphill battle
While it was likely a relief to Ms Greenwood to finally have a name to describe what had been wrong for most of her life, like many sufferers of Fibromyalgia, she then had to work out the exact limits of her own body under the disease and medication – a path every sufferer has to take, and one which differs from person to person.
“I had never heard of it when I was diagnosed, and that was a bit overwhelming,” Ms Greenwood said.
“They gave me some information there, which was basically just a leaflet. It wasn’t very helpful.
“So from that point it was really a learning experience, trying to work out my own limits – what I can do, what I can’t do, when I need to stop.
“It can be very lonely. There’s days where you just can’t get out of bed because you’re too tired or too sore, often after not being able to sleep all night. And that really affects everything, you can’t function.
“It affects your relationships, your own feeling of self worth, your ability to do pretty much anything.”
It comes as no surprise, then, that a lot of Fibromyalgia sufferers also suffer form depression. It’s this slippery slope that Ms Greenwood hopes to tackle head-on with her support groups.
“When you spend days and days, even weeks, by yourself, struggling to get up and get around, getting frustrated at yourself for not being able to do what you used to be able to do – that will affect anyone,” she said.
“We have one lady in the Baldivis group who was basically afraid to leave her house for two years. She would occasionally go to the shops, but everything else – her relationships, her social life – all broke down.
“She’s managed to get better again now, because she’s had a chance to talk about it, and she knows there are people out there who can relate to her.
“That would be my main message to people out there: this disease makes you feel alone, but you’re not alone. We’re here to help.”
Fibro and Us meet regularly in Mandurah, Rockingham, Baldivis and Kwinana.
Ms Greenwood and Fibro and Us are also currently looking for community support, in the form of sponsorship or other ideas, as well as volunteers and helping hands for their committee group