Researcher seeks answers to fibromyalgia - a mystery disease

Five in 100 people may have this disease but are often dismissed by doctors

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Fibromyalgia is a common but somewhat mysterious chronic pain condition.

MYSTERY: The chronic pain and many other symptoms of fibromyalgia are often dismissed by doctors.

MYSTERY: The chronic pain and many other symptoms of fibromyalgia are often dismissed by doctors.

Evita has lived with chronic pain for many years. In the past doctors would tell her she had 'weird' symptoms and that it was all in her head.

Until one doctor made a diagnosis....

"The pains got worse and still no answers from the doctors. 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 almost doubted it was real myself sometimes," says Evita.

This story of dismissal - of being told 'it's all in your head' - is sadly familiar 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.

However, while being validated with a diagnosis was relieving, it was only the beginning of a long road of learning resilience and daily management strategies.

There is currently no cure for fibromyalgia, a relatively common but somewhat mysterious chronic pain condition which affects two to five per cent 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 has shared her story of living with fibromyalgia with Sharon Erdrich, an Auckland-based health consultant and PhD researcher with the University of Sydney whose PhD project, the FIDGIT Study, is examining the relationship between the symptoms of women with fibromyalgia and the gut and its microbiome.

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.

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.

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," says Evita. 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.