Pain covers a wide range of unpleasant physical sensations, but everyone, whether living with or without multiple sclerosis (MS), experiences it differently. Pain is one of the less recognised common symptoms of MS, despite an estimated two-thirds of people living with MS experiencing pain.
It’s important to assess whether your pain is MS-related or from another cause. With the right information and support, pain can be minimised or managed effectively to maintain a healthy and active lifestyle.
In 2021, researchers supported by MS Australia ran a survey to better understand pain in 1,678 Australians living with MS. They used data from the Australian Multiple Sclerosis Longitudinal Study (AMSLS) to explore how common different types of pain are in MS, how severe and long-lasting they can be, and how predictable they are. They also asked whether the participants believed their MS was the cause of their pain, how people manage their pain, what treatments they use, and which ones they feel work best.
The table below shows some key findings from the report, including:
| Pain type | Description | What % of participants with regular pain had this pain type? | What % believed their pain was caused by MS? |
|---|---|---|---|
| Dysesthetic extremity pain | Burning, tingling, numbness, prickling or vice or tight band-like sensations | ||
| Spasticity-associated pain | Increased stiffness of the limbs, including cramping, aching or pulling sensations | ||
| Painful tonic spasm | Sudden, involuntary, sometimes painful tightening of a limb, often lasting up to 2 minutes | ||
| Headache | Aching, pressure or throbbing in any region of the head, without migraine features | ||
| Allodynia | Discomfort or pain from light touch or stroking the skin | ||
| Migraine | Pain to one or both sides of the head, sometimes with nausea, vomiting, avoidance of light/noise and changes in vision | ||
| Lhermitte’s phenomenon | Electric-shock-like sensations that start in the neck or back and can run down the spine to the extremities | ||
| Optic neuritis | Aching or throbbing pain with eye movements, sometimes with blurred or impaired colour vision and vision loss | ||
| Trigeminal neuralgia | Severe, short lived, repetitive, lightning-sharp pain to one side of face, jaw or gum |
When pain becomes a concern, a general practitioner (GP), neurologist, and/or MS nurse should be the first point of contact. They can help assess pain and recommend treatments or interventions. Depending on the nature of the pain, they may refer to a pain specialist, or other healthcare providers who offer specialised care. Apart from a GP and neurologist, AMSLS participants in regular pain mostly had a physiotherapist, massage therapist, or podiatrist as part of their healthcare team.
It is important not to wait until the pain becomes overwhelming before seeking help, as early intervention can make a big difference in managing symptoms.
Communicating your pain to your healthcare team is the first step towards understanding and managing your pain. We’ve created a simple, easy-to-use communication flyer to help you talk about your pain with your healthcare team. It’s designed to support conversations by helping you describe the type, intensity, and impact of your pain, so your team can better understand what you’re going through and work with you to find the right support and management. Whether you’re preparing for an appointment or just want to feel more confident speaking up, this flyer is a practical tool to help make your voice heard.
Managing pain often involves using a mix of approaches that are suited to your individual needs. These may include medications, self-care routines, and techniques offered by health professionals to help reduce discomfort and improve your wellbeing.
Among AMSLS participants who regularly experienced pain, 87% were using more than one type of medication to help manage it. Of these, 62% reported that their medications provided either much or complete relief. Using more than one medication can help target different types of pain or sometimes improve relief from a single pain type when medications work together. However, some medications can cause unwanted side effects. Starting with a low dose may help the body adjust and improve how well the medication is tolerated. While it is not uncommon for people to stop medications, it can be helpful to keep working with your healthcare team to find an option that works best for you. When it comes to strategies beyond medication, more than half of AMSLS participants were using six or more different approaches to manage their pain. The most commonly used were exercise, rest or sleep, changing position, and distraction. Treatments such as chiropractic care, massage, osteopathy, naturopathy, and physiotherapy were rated as the most effective by participants. Thus, combining different approaches may be key to managing your pain most effectively.
Physical and mental health are deeply interconnected when it comes to pain. Chronic pain doesn’t just affect the body; it can also take a toll on mental wellbeing. At the same time, mental health challenges can amplify the experience of pain, making it feel more intense or harder to manage. This cycle can impact sleep, energy levels, and relationships. That’s why effective pain management often includes both physical treatments, such as medication or physiotherapy, and psychological support, such as counselling, mindfulness, or relaxation techniques. Among the AMSLS participants who regularly experienced pain, levels of depression and anxiety were much higher compared with those who did not report regular pain. Addressing both physical and mental health may help to improve overall quality of life.
To support your mental health, consider the following:
It’s important to reach out for help if you are experiencing poor mental health and not functioning well. A good starting point is contacting the Beyond Blue Support Service which is available 24/7 for brief counselling or even just to help point you in the right direction (https://www.beyondblue.org.au/get-support). If you need immediate support, consider reaching out to a crisis support helpline such as Beyond Blue (phone: 1300 224 636), Lifeline (phone: 131 114) or seeking assistance at the nearest hospital emergency room.
Finding the right mix of treatments and strategies can take time, and it’s normal for adjustments to be needed along the way. Keeping open and honest communication with your healthcare team is key. If something isn’t working, don’t hesitate to speak up, your pain management plan can be adapted to better support your needs.
