The invisible disease: Fibromyalgia sufferers speak out
More and more people are diagnosed with Fibromyalgia every year,
but very little is known about this debilitating disease. One woman is
hoping to make a change locally.
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 rleaitonships, 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.
Source:http://www.mandurahmail.com.au/story/4473001/the-invisible-disease-fibromyalgia-sufferers-speak-out/
The invisible disease: Fibromyalgia sufferers speak out
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