Dr Therese Burke has been working as a Clinical Nurse Consultant in MS for over 15 years and as a researcher in the MS field for over 20 years, setting up and managing the clinical and research MS unit at Westmead Hospital/The University of Sydney until 2017. Therese was awarded a PhD for her study on the lived experience of Relapsing Remitting MS by the University of Notre Dame Australia (UNDA) in 2019, followed by post-doctoral research into the role of the MS Nurse in Australasia 2020-2021. Therese currently continues her own research as a Senior Research Fellow in the School of Nursing at UNDA, as well as managing the clinical trials platform at MS Research Australia. Therese has a passion for educating people and families living with MS, particularly at the start of the journey and has co-authored an international paper on the evolving role of the MS Nurse. Therese has been a Board member of the International Organisation of MS Nurses for many years, a Board member and President of the credentialling body for MS Nurses and a past President of MS Nurses Australasia. More recently, Therese was awarded an international “ Nightingale award” in the International Year of the Nurse and Midwife (2020) to continue research into improving the lives of people living with MS.
Living with Multiple Sclerosis (MS) and Pain
By Therese Burke
Pain is a very under-estimated symptom in MS and can result from many different causes and reasons. It is equally as important not to automatically blame an episode of pain on MS, as it is to consider an MS related reason as possibly being the cause of some forms of pain. In those who live with MS, pain is a common and complex experience, interfering with physical, psychological and social function. It has been reported that up to 57% of people living with MS complain of pain some time during the disease course and 21% complain of pain at the onset of MS1. Pain in MS has also been linked to a decreased quality of life2, making managing pain of prime importance in living with MS.
Types of Pain in MS
Most cases of pain in MS are chronic in nature, but can differ immensely in their onset and cause. Pain can be caused by damage to the myelin which then affects neural (nerve) communication.
Spasticity in muscles (a tightening and/or stiffness of the muscle caused by nerve damage from MS) can cause prolonged and severe pain. However, spasticity can be managed by several interventions, including medications (muscle relaxants and Botox therapy), physiotherapy, massage, positioning assessments/changes and stretching exercises. Usually optimum results can be obtained by combining several of these therapies. Your GP, MS Nurse and Neurologist can assist with referrals and recommendations.
Nerve pain can result from MS lesions occurring in certain parts of the brain and spinal cord. Nerve pain can present in a variety of ways – as sensations described as “pins and needles”, burning, tingling, prickling, stabbing; and can sometimes not be viewed strictly as “pain”. Discussing these symptoms with your Doctor is very important, as there are some medications available which can help specifically with nerve pain. It is also important to discuss these symptoms with your Neurologist, especially if they are new symptoms, as they may be the sign of a relapse.
Uhthoff’s phenomenon is common in those living with MS, where a return of old symptoms (such as nerve pain) can occur in the setting of an increase in body temperature such as with an acute infection, post surgery, exercise and heat, but is temporary and doesn’t last longer than 24- 48 hours, usually settling with rest and temperature reduction.
Pain from optic neuritis (inflammation of the optic nerve at the back of the eye) can be acute and debilitating at onset, but usually settles in time. It is critical to have a careful assessment of any type of eye pain, as it could be a sign of a relapse; especially if it is a new symptom, where an immediate review by your doctor is necessary.
Headaches are not a common feature of MS, but can occur at any stage and be related or not related to MS. It is also very important to discuss the pattern and type of headaches with your Doctor; for example, headaches can present as a feature of migraines, tension headaches or cluster headaches, and a careful assessment of your specific symptoms can often lead to a more targeted treatment and possible relief of pain. Trigeminal neuralgia, an inflammation of the trigeminal nerve, can cause severe and chronic pain on one side of the face and requires careful management.
The news is thankfully good for most types of pain in people living with MS. Firstly, as already mentioned, a careful and thorough pain assessment greatly assists in a targeted and individualized pain relief plan. Your GP is often the first port of call, but for more challenging pain, your Neurologist can be an important source of up-to-date information on the latest therapies.
Managing pain pharmacologically means considering not just traditional analgesics (such as paracetamol, ibuprofen and codeine), but other drugs such as medications used for depression and epilepsy may also have an important role to play in managing pain for some people. Other therapies, often working together with medications (perhaps for a short while before then taking over from medications), include psychological interventions to manage chronic pain, exercise, rest, stretching, physiotherapy and occupational therapy assessments (especially regarding seating and positioning). It is important to “think outside the square” and to consider a multidisciplinary approach to managing pain in MS. Ongoing and open communication with your Doctor will greatly help.
To learn more, read the pain symptom sheet.
1. Leonavicius, R & Kalnina, J. (2015).Beyond Pain in Multiple Sclerosis. Neurology, Psychiatry and Brain Research. 21 (2):82-87.
2. Gromisch E; Schairer, L; Kim, S; Foley, F. (2016). Assessment and Treatment of Psychiatric Distress, Sexual Dysfunction, Sleep Disturbances, and Pain in Multiple Sclerosis: A Survey of Members of the Consortium of Multiple Sclerosis Centers. Int J MS Care. 18(6):291-297. doi: 10.7224/1537-2073.2016-007