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Pain – an invisible symptom of MS

Multiple sclerosis (MS) is a neurodegenerative disease directed by the immune system which affects areas of the brain, spinal cord and optic nerves. Nerves lose their protective coating (called myelin), leading to a loss of nerve function which may be temporary or more lasting. MS symptoms vary greatly both between individuals and within individuals, with some symptoms appearing intermittently, and others becoming more chronic. One of the less recognised common symptoms of MS is pain, which can take many forms and greatly affect the quality of life for people with MS. International studies estimate that about two thirds of people living with MS experience pain as one of their MS-related symptoms. Research into pain and management of its symptoms has been rated as one of the highest priorities for Australians living with MS, as uncovered in previous research studies conducted by MS Research Australia.

Causes of pain

Pain in MS can often be related back to two main causes, neuropathic (“nerve”) pain and nociceptive pain (from damage to tissue). Neuropathic pain in MS originates directly from the damage to the myelin, with disrupted messages to the brain. Most commonly, this results in feelings of numbness, pins and needles, and a burning sensation which can occur anywhere in the body. Examples include Lhermitte’s sign (an electric shock feeling when bending the head, which is caused by MS lesions in the spinal cord), optic neuritis (sharp eye pain caused by lesions on the optic nerve) and “the MS hug” (a tightness around the chest caused by lesions in the spinal cord), as well as more generalised feelings of numbness or burning in the limbs. Nociceptive pain relates to the damage caused to tissues such as muscles, tendons and ligaments. For example, nociceptive pain can result in back pain or hip pain related to altered walking patterns in people with MS, or spasticity (spasms) from tight muscles reacting to damaged nerves.

There may also be other types of pain in people living with MS, such as headaches and side effects from medications and injections. Some pain or discomfort occurs only when overheating takes place from exercise or similar activities (called Uhthoff’s phenomena). Some types of pain are unique to MS and may indicate new lesions, and other types of pain may not be related to MS but may still impact people living with the disease.

Managing the pain

Pain can be an invisible symptom of MS and many people living with MS do not realise that their pain may be related to MS, meaning that pain remains an under-reported and under-treated symptom. Pain has the potential to cause many flow-on effects, which are detrimental to health and wellbeing in MS, including poor sleep, fatigue, depression, and anxiety. It is therefore crucial to understand the type of pain people with MS are experiencing. This firstly involves a thorough assessment to assess the cause of pain, followed by the development of a pain management plan by an MS specialist healthcare team, pain specialist or general practitioner. The ultimate aim of pain management is to improve overall quality of life.

Treating the pain

There are many options available to treat pain, depending on the cause, and some treatments may be used in conjunction with each other to improve the overall benefits. Options include medications, physiotherapy sessions that can include stretching, exercise and movement, and occupational therapy assessments of posture and seating. People with MS may also wish to explore complementary therapies such as acupuncture and psychological interventions to manage the pain, such as meditation and cognitive behavioural therapy. Identifying the correct source of the pain is essential to help guide the most beneficial therapies.

Researching pain and MS

Unfortunately, the area of pain and pain management in MS is still poorly understood, even with all the recent MS breakthroughs. The International Progressive MS Alliance has identified that pain is an area of unmet need in progressive MS care that requires intense attention and research. A “call to action” from the International Progressive MS Alliance in 2021 has encouraged MS researchers to target this debilitating symptom to facilitate treatment interventions and improve wellbeing for people with MS. 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 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.

A pain free future for 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. By continuing this work, MS Australia can supercharge the research agenda, ensuring that through targeted research efforts, this debilitating symptom will be recognised, treated, and better managed.

Pain in MS workshop outcomes

MS Research Australia has released the outcomes of the Pain in MS workshop hosted in October 2019 to identify gaps in research into MS-related pain.

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Melissa Quirk

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Pain – an invisible symptom of MS