Pain and fatigue are daily companions for Mr Brown and it's only when, and how, he wakes up each morning that he can have any idea what he will be able to manage each day.

The retired teacher from Berringa in west-central Victoria, south west of Ballarat, was diagnosed with ankylosing spondylitis about 12 years ago but had symptoms for much longer.

In AS extra bone grows which can cause parts of the body to fuse. In his case it affects his torso from his pelvis up. His pelvis is fused and several ribs have joined on to vertebrae in the spine.

He also has epiphysis, or an inflammation of the tendons, which commonly occurs alongside AS, and fibromyalgia which causes body-wide pain and extreme tiredness and is often confused with arthritis, and some age-related osteoarthritis.

Musculoskeletal Australia (MSK) is conducting the largest survey in Australia of people living with musculoskeletal conditions or caring for someone affected, to determine how their care can be improved.

They estimate seven million Australians live with musculoskeletal conditions or care for someone who does.

A preliminary study last month found people living with the conditions needed help and support to better manage their conditions and have a better quality of life, and Mr Brown added that education for community and medical experts was also needed to help lessen the burden of the conditions.

Respondents said affordable treatment options and services such as physiotherapy, exercise classes and medication would better help them manage their conditions and three quarters said more government support for ongoing costs of treatment would improve their ability to manage.

Many respondents, including Mr Brown, were unable to work because of their condition and had to retire early, stop working, change to part-time work or had their career plans impacted by their condition.

Many also suffered other conditions, mental health issues, had their daily activities curtailed and a decrease in social activities.

Mr Brown now lives by the mantra "I can do what I can, when I can and what I can't, I don't".

"I don't plan a lot because I don't know how I'm going to feel when I wake up in the morning. If I wake up and feel like a wreck, then I don't do much but if I wake up and feel reasonable I will do stuff until my body says no more."

Compounding the constant pain and fatigue is the fact these ailments are invisible and in some cases not much is known about them, even in the medical profession.

."The pain makes you fatigued and because it can't be seen it's been hard to get treatment," he said. "You look fine, you've done all these tests that come back normal, so some doctors think it must be in your head.

"The problem for those of us who have these conditions is when people see us out in the community and we look well, the only reason they are seeing you in the community is because it's a good day and we do feel better - they don't see us on those other days or the fact you won't see me for the next two or three days because you slow right down because you're getting over that good day."

IN OTHER NEWS

MSK reports there are more than 150 musculoskeletal conditions, the most common including osteoarthritis, back pain, rheumatoid arthritis, gout, osteoporosis and fibromyalgia, which cost the economy $55 billion per year and are the most common cause for early retirement.

"The prevalence of musculoskeletal conditions in Australia is becoming exceedingly high and can have a profound impact on people's lives, including their mental wellbeing and socio-economic circumstances," said MSK chief executive Rob Anderson.

"MSK is committed to representing the needs and perspectives of people living with these conditions and wants to achieve the best outcomes for them. Our national consumer survey is the first step to providing us with a broader understanding of their experiences, needs and how to best support them."