Fibromyalgia has a massive impact on patients’ ability to work, new research has revealed.

A pilot survey of almost 300 Western Australians with the condition has found 55% were full-time employees at the time of diagnosis. That number plummeted to just 15% five years after diagnosis. And worryingly, 45% of patients were not working at all.

“That’s a huge chunk of people dropping out of the full-time workforce,” said Dr Emma Guymer, a rheumatologist and head of the Fibromyalgia Clinic at the Monash Medical Centre’s Department of Rheumatology.

Dr Guymer was lead author on the study, published in the Internal Medicine Journal, and said that while the pilot survey had its limitations, it indicated fibromyalgia had a high impact on work ability, and highlighted the need for early diagnosis and intervention to prevent or minimise work disability.

She said there was no other published data about the impact of fibromyalgia on work ability in Australia.

“This is a whole group of people who just can’t work full time, I feel that is a really big issue for us as a society,” she said. “These are just simple yes and no answers here, I don’t think we’ve even scratched the surface – I think it’s a real can of worms.”

The survey respondents were split on whether medication improved their ability to work – 24% said it had increased their work ability, while 21% reported it had reduced their work ability.

“A lot of people (surveyed) had developed symptoms 20 years ago but were only diagnosed five years ago,” Dr Guymer told the limbic. “People are wafting around, feeling awful trying to hold a job.”

She said many patients were reluctant to talk to their employer about their condition because of the stigma and lack of understanding attached to fibromyalgia.

“They just don’t want to use the ‘f’ word so to speak,” she said. “You can postulate whether it does or does not exist, most people just want to feel better.”

She said there the spectrum condition should be looked at as any other condition that fluctuated, including blood pressure.

“I really hope it stops becoming a disease that people are pigeonholed into,” Dr Guymer said. “The more we talk about this in the community the more is can be demystified. Why are we calling it the ‘f’ word – let’s get it out in the open.”

She said the survey highlighted the need for more research into the impact fibromyalgia had on a person’s work ability, both personally and from a workforce perspective.

“There’s a lot to be gained by sorting this out and getting on top of it – both from a society and individual point of view,” she said.