Guest article: Rohan Greenland, MS Australia CEO, Pain – an invisible symptom of MS

“Every time my heart beats it sends a painful ripple through my chest, mouth, teeth and back. Not only is this incredibly painful, it is exhausting.” – Associate Professor Des Graham, President, MS Australia.

The MS Australia President has lived with MS for more than 15 years and experiences the reality of living with pain every day. To manage his pain, in addition to his daily medication regime, he is required to go into hospital for six days, twice a year, for treatment that resets his pain receptors. And he is not alone.

Pain is a very common symptom experienced by many of the 25,600 Australians who are living with MS.  It also affects people living with MS in many different ways. This is because some types of pain are unique to MS and other types of pain, while not related to MS, may still impact people living with the disease.

MS is the most common acquired chronic neurological disease and is the result of damage to myelin – a protective sheath surrounding nerve fibres of the central nervous system. When myelin is damaged this interferes with messages between the brain and other parts of the body. MS affects more women than men and is often diagnosed between the ages of 20-40 years.

MS symptoms can vary greatly both between individuals and within individuals, with some symptoms appearing intermittently, and others becoming more chronic. Pain is one of the less recognised common symptoms of MS and greatly affects the quality of life for people with MS.

At MS Australia, we know that Australians living with MS have rated research into pain and the management of symptoms as one of their highest priorities. We aim to reflect these priorities in the way we fund MS research.

As one person living with MS has recently told us, “The thing that makes it so hard is that others can’t see my pain, they can’t see or feel the hammering I feel in my skull, or the relentless pins and needles up and down my leg. But I would give anything to be free of this constant pain,” says Josie, a 42-year-old woman who experiences pain as an invisible symptom of her MS.

The good news is that there have been significant improvements in the treatment and care available for people living with MS. There are now many options available to treat pain. These include medications, physiotherapy and pilates sessions that can include stretching, exercise and movement, occupational therapy assessments of posture and seating, complementary therapies such as acupuncture, and psychological interventions to manage pain, such as meditation and cognitive behavioural therapy.

Following a pain in MS workshop, hosted by MS Research Australia in 2019, Australian researchers were encouraged to target the understanding and treatment of MS-related pain as a priority, to better understand this debilitating MS symptom. Currently, we eagerly await results from an MS Research Australia supported study looking at mindfulness as a pain strategy as well as two studies exploring the use of medicinal cannabis in MS.

As a community, it is vital that we bring together as many resources as possible to prioritise the understanding and management of pain for people with MS. Working together with Painaustralia is an important component of this approach, supporting the National Strategic Action Plan for Pain Management within the MS community.

We are committed to supercharging our investment in MS research over the coming decade, including targeted research so this debilitating symptom will be better recognised, treated, and managed. This will allow us to improve the overall quality of life and minimise distress for people living with MS, while working towards the ultimate goal of finding a cure for this disease, so that together, we can leave MS where it belongs, behind us.