PRESS RELEASE: ‘IT’S NOT JUST DRAMA’. NEW RESEARCH INVESTIGATES INVISIBLE DISEASE, FIBROMYALGIA

FOR RELEASE ON THE 18TH MARCH

IT’S NOT JUST DRAMA: NEW RESEARCH INVESTIGATES INVISIBLE DISEASE, FIBROMYALGIA

“The pains got worse and still no answers from the doctors. Then I went to several doctors, and finally one doctor…had an inkling it was fibromyalgia and diagnosed it,” says Evita, a woman whose chronic pain was so severe it diminished her social life and led to her dropping out of work. Even now, almost two decades later, she still lives with pain that affects her life every day. “Before (diagnosis), I’d been told I had weird symptoms, and maybe it was in my head, and I almost doubted it was real myself sometimes.”

This story of dismissal – of being told ‘it’s all in your head’ – is a sadly familiar one for many women who suffer from chronic pain and similar “invisible” diseases. Women have historically been more likely to have chronic pain dismissed as ‘stress’ or ‘over-emotion’. This often causes more stress as affected women start doubting their own sanity and the physical messages they get from their body.

Evita’s doctor told her that the common treatment for her condition was psychotropic drugs such as antidepressants. She resisted the suggestion.

“…(It’s) realising that you’re not crazy, you’re not unnecessarily taking the anti-depressants.” She says, but also notes that while being validated with a diagnosis was strangely relieving, it was only just the beginning of a long road of learning resilience and daily management strategies.

That is because there is currently no cure for her chronic condition, fibromyalgia.
Fibromyalgia is a relatively common but somewhat mysterious chronic pain condition. It affects 2-5% of the population, with women more frequently affected than men. The predominant symptom is widespread pain, accompanied by an array of other symptoms, such as altered digestive function, mood changes, fatigue, and sleep disturbances. To date, there is little understanding of what causes this complex condition.

Evita shares her story of living with fibromyalgia with Sharon Erdrich, an Auckland-based health consultant and PhD researcher with the University of Sydney. Evita’s story illustrates the importance of her PhD project, the FIDGIT Study, which is examining the relationship between the symptoms of women with fibromyalgia, the gut and its microbiome.

In respect to World Sleep Day, Sharon wishes to highlight how invisible diseases like fibromyalgia and its chronic pain often create disturbances in quality of life, such as altered digestion and appetite, and poor sleep quality.

To have disrupted sleep is to throw your whole lifestyle into disarray, as your body struggles to deal with disturbed REM cycles, leading to less restful sleep and fatigue. Studies have found that short sleep times, fragmented sleep and poor sleep quality often causes heightened sensitivity to pain. This furthers the body’s stress as pain limits periods of restful sleep, creating a vicious cycle. Everything is connected, and research into these connections is direly important.

As a woman health researcher and health practitioner, Sharon sympathises with what many women go through to get their conditions diagnosed, only to be greeted with the reality that there are few choices for relief. Medications to help fibromyalgia have variable success often with unacceptable side effects. Generally, women receive little support in managing this condition to live fulfilling lives.

“No-one really knew how to make it better,” Evita says to Sharon. Many of the women who volunteered for the study have echoed Evita’s sentiment; living up to 20 years with undiagnosed chronic pain, unable to live life to the fullest and feeling too afraid to tell friends and family of their daily reality.

It’s time to take a step towards change.

Support this important research and watch Evita’s full interview here:
https://givealittle.co.nz/cause/lets-help-women-with-fibromyalgia
Want to learn more about the FIDGIT study? Check out the study website:
https://www.thefidgitstudy.com/

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Contact:
Sharon Erdrich
[email protected]
Phone: +64 272 393003