Pain is one of the less recognised symptoms of multiple sclerosis (MS) but affects around two-thirds of the over 25,600 Australians living with the disease. On the occasion of National Pain Week from July 25 to 31 2022, MS Australia CEO Rohan Greenland talks about pain in MS, with MS Australia National Advocate Erin Brady.
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.
Pain in MS can often be related to two main causes: neuropathic (“nerve”) pain and nociceptive pain (from tissue damage). People with MS can experience more than one type of pain and no two people experience MS-related pain in the same way. For some, pain can be long-lasting, chronic, and greatly impact daily life; for others, it may come in short irritating bouts, be minimal or even non-existent.
After more than 20 years living with MS, National Advocate Erin Brady, 43, resides with phenomenal resilience, in the first camp.
“There are times when pain is just indescribable; you can’t differentiate what the pain is, you can’t pinpoint where it comes from, where it starts and ends; it’s all encompassing. If you do or don’t move it hurts; if you don’t move, in the long run it will hurt more, but sometimes you don’t care and you are just begging for relief.”
With signature tenacity, Erin has worked closely with her healthcare team to leave no stone unturned in exploring options for pain management, understanding the importance of evidence-based therapies, but also thinking “outside the square”. Exemplifying National Pain Week‘s focus on the importance of triple-A standards of care for Australians living with chronic pain: Awareness, Accessibility and Affordability, a coordinated and multifactorial approach is often required for MS pain management, in many cases coordinated by an MS Nurse.
MS Nurses specialise in the management of MS symptoms and understand the importance of pain to the cycle of other MS symptoms, and how they impact one another (for example fatigue, pain, sleeplessness and depression). MS Nurses can also be excellent sources of referral to other health care professionals such as psychologists, physiotherapists and occupational therapists, who may be able to provide practical and hands-on help managing pain using strategies such as mindfulness, behavioural therapies, stretching, targeted exercise and seating assessments.
MS Australia’s recent landmark report on MS Nurse Care in Australia showed that people who have access to an MS Nurse have significantly improved health outcomes across a myriad of symptoms, including a 21% reduction in pain symptom scores.
The extent of Erin’s pain has meant relying not only on medical and physical treatments but digging deep, mentally and emotionally.
“For me, my greatest enemy is stress. I can have my pain under some form of control but as soon as I get stressed, that sends my pain levels through the roof. The emotional turmoil can feel insurmountable and is often the hardest part to overcome.”
Here she has turned to practicing mindfulness and meditation, illustrating the importance of self-connection in managing MS. “The gaps in our understanding of pain, are now being filled by not just modern, western medicine, such as neuroplasticity, but the acceptance and understanding of the wonderous effects of mindfulness, meditation and a greater understanding of the human mind.”
At MS Australia, we know that Australians living with MS, both relapsing and progressive forms of the disease, have rated research into managing pain among the top five priorities for symptom research. We aim to reflect these priorities in the way we fund MS research. 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. MS Australia is committed to supercharging our investment in MS research over the coming decade, including targeted research in pain, so this debilitating symptom will be better recognised, treated, and managed.
You can find more information about the causes and management of pain in MS on our website.
National Pain Week is an annual awareness event coordinated each year by Chronic Pain Australia.