MND affects the motor nerves that carry messages from your brain and tell your muscles what to do. As the motor nerves gradually deteriorate and messages can’t get through, muscles become weak, stiff and begin to waste which can result in pain and discomfort. MND does not usually cause damage to sensory nerves and it is therefore not thought to cause pain itself. Sensory nerves, however, will carry messages to your brain if you have pain and discomfort due to MND symptoms.
A recent systematic review to look at research to date on the prevalence of pain in MND determined that physical pain is experienced by up to two-thirds of people living with MND.1 However, pain is often a neglected, poorly managed symptom of MND.2,3,4,5
Pain may be acute or chronic and can occur at all stages of the disease, including early on.2,5 Pain can significantly interfere with the quality of life of people living with MND due to its impact on activity levels, mood, sleep, relationships and general enjoyment of life.2,3,4,5 Careful and timely assessment and an individualised, multidisciplinary approach are needed to effectively manage pain.2,5
There are many causes of pain for people living with MND.1,5 The most commonly reported types or sources of pain are related to cramps and spasms.1,5 People living with MND most frequently experience pain in the legs, arms, shoulders, neck, back, feet, abdomen, hands and head.1,3,5
People living with MND can experience pain as a result of:
Pain varies from person to person throughout the course of the disease and may encompass both physical and psychological pain.1,4,5
If you are experiencing pain and/or discomfort it is important to consult with a general practitioner (GP), neurologist, specialist MND clinic or palliative care physician to work out the causes of the pain so that a management plan to address your individual needs can be worked out.2
Read our multidisciplinary care factsheet
Pain management in MND requires early and ongoing assessment, careful monitoring and the use of pharmacological and non-pharmacological interventions tailored to the specific cause of the pain.2,3,4,5,10
There are a number of pharmaceutical options including simple analgesics (ie paracetamol), anti-inflammatory, muscle relaxants, antispasmodics, anticonvulsants, antidepressants, steroid injections and opioids which may ease the symptom depending on the type, severity and causes of the pain.5,6 The National Institute for Health and Care Excellence (NICE) guideline, motor neurone disease: assessment and management, provides guidance on treatment options to manage muscle problems such as cramps, stiffness and spasticity.9
Medications can help relieve:
It is important for the treating doctor to carefully assess the patient and monitor side effects, which in the case of medications such as muscle relaxants and opioids, can be quite troublesome.5,7,9 Additionally, the treating doctor will need to take into account the person's individual needs and preferences, and whether they have any difficulties taking medicine, such as problems swallowing.9
A timely, coordinated, multidisciplinary team approach with early referral to a physiotherapist and an occupational therapist is important in reducing the risk of injury and managing pain and discomfort.5
Health professionals that can help manage different aspects of pain in MND, include:
There are a range of non-pharmacological interventions to manage and prevent pain and discomfort including:
1. Exercise programs to:
2. Advice and training to the person, their family and care providers on:
3. Massage, relaxation and alternative or complementary therapies may be helpful for some people
It is important to discuss your needs, abilities and preferences with your physiotherapist or health care team so that any interventions to manage pain and discomfort are tailored to your needs and the needs of your carer.9,10
Learn more in our factsheets Physical activity and MND and Breathing and MND.
Pain Australia: What is Pain?
Pain Australia: Common forms of pain
Palliative Care Australia: Facts about morphine and other opioid medicines
Palliative Care Australia: Massage therapy in palliative care
Pain Management Network
For more information and referral for support contact your GP, neurologist, relevant health professional, NDIS support coordinator or state MND Association