Pain covers a wide range of unpleasant physical sensations, but everyone – people living with or without multiple sclerosis (MS) – experiences it differently. Pain is one of the less recognised common symptoms of MS, with an estimated two-thirds of people living with MS experiencing pain.
It’s important to assess whether any pain is caused by your MS or other reasons. With the right information and support, pain can be minimised or managed effectively to maintain a healthy and active lifestyle.
No two people experience MS-related pain in the same way. For some people, pain can be long lasting, chronic, and impact daily life, for others it may come in short irritating bouts, be minimal or even non-existent.
Pain is often described by how long it lasts:
Pain in MS can often be related back to two main causes, neuropathic (“nerve”) pain and nociceptive pain (from damage to tissue). People with MS can experience more than one type of pain.
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, crawling sensations or a burning sensation which can occur anywhere in the body. Examples which are seen in MS include Lhermitte’s sign (an electric shock feeling when bending the head, which is caused by 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.
For people with MS, pain may also be experienced due to a medication side effect, an infection or from a health condition not related to MS. Other MS symptoms can also make pain worse, such as fatigue, heat sensitivity or depression. 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.
Pain is one of the challenging invisible symptoms of MS. It can be chronic, debilitating and affect your daily life. Due to its invisibility, others may need help to understand your pain, learn what makes it better or worse and what they can do to help. Tell your family, friends, carer and/or co-workers about your pain, so they can understand what you’re going through.
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’s important to investigate your pain and why it occurs, and to develop strategies for any daily, sudden, severe or new pain. This can involve 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 GP. The ultimate aim of pain management is to improve overall quality of life.
To help your healthcare team understand your pain and its effect, you may want to describe and discuss:
It can be useful to recognise the early signs of pain and how it affects you, and tell people close to you, so they can understand any limitations from your pain.
It’s important to have a personal pain management plan that details who can help with the pain, what can be done to manage it, when the strategies should be reviewed and what to do in an emergency. Your healthcare team will establish this management plan with you (see above).
Some management strategies may include exercise, movement or posture changes, heat or cold applications, or alternative treatments such as aromatherapy and massages.
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. Your healthcare team will establish the best method of treatment and/or management after a thorough assessment.
Medication may be used in conjunction with pain management strategies and the type used, will depend on the source of pain. For some people, referral to a pain specialist or pain clinic can be very helpful.
Physiotherapy sessions may be advised and can include stretching, exercise and movement, also occupational therapy assessments of posture and seating.
To manage pain, people with MS may also wish to explore complementary therapies such as acupuncture and psychological interventions, such as meditation and cognitive behavioural therapy. Identifying the correct source of the pain is essential to help guide the most beneficial therapies.
There is support available to help you manage your MS.
Your neurologist, MS Nurse or GP should be the first contact for any new and/or persistent pain concerns, so they can perform a detailed assessment and tailor a management plan or referrals if needed.
Contact your state or territory MS organisation to access services such as MS nurses, peer support and other resources.
The following support services may be able to provide advice on pain and wellbeing: