MND Australia
MND Info Line 1800 777 175. 9am to 4.30pm Monday to Friday.

Pain management with MND

What you should know

  • Motor neurone disease (MND) itself does not cause pain 
  • Progressive muscle weakness and wasting, immobility, muscle cramps, stiffness and problems from changes to posture can cause pain
  • Pain from pre-existing conditions such as arthritis may get worse due to muscle wasting
  • Pain can significantly interfere with the quality of life of people with MND
  • Early referral to a physiotherapist and occupational therapist is important to identify the potential cause of pain
  • A GP, neurologist, palliative care physician and specialist MND Clinics can assist with pain management

Introduction

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

Causes of pain in MND

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:  

  • loss of muscular control to support large joints and maintain spinal posture and balance
  • injury to joints due to improper handling or inadequate support 
  • reduced ability to reposition themselves
  • immobility can also contribute to muscle wastage, reduced joint range of motion and pressure areas, to name a few
  • muscle cramps 
  • spasticity or prolonged and abnormal muscle contractions
  • pressure sores 
  • constipation 
  • impaired circulation due to immobility
  • breathing problems due to weak respiratory muscles which may contribute to headaches  
  • itching
  • pre-existing conditions such as arthritis

What can help?

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

Pharmacological interventions

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:

  • cramps
  • spasticity
  • constipation 
  • pre-existing conditions such as arthritis 
  • depression and anxiety
  • pain and discomfort

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

Non-pharmacological interventions

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:

  • a physiotherapist for comprehensive assessment may help identify potential causes of pain and appropriate management options, which may include exercise programs (see below)
  • an occupational therapist for advice and input regarding assistive technology, aides and appliances to assist with transfers, prevent falls, reduce the risk of pressure sores and maintain independence for as long as possible
  • an orthotist for provision of splints to support, straighten or maintain a limb in position 
  • a counsellor or psychologist for emotional and psychosocial support 
  • a respiratory specialist if you are experiencing headaches on waking as breathing may be affected

There are a range of non-pharmacological interventions to manage and prevent pain and discomfort including:

1. Exercise programs to:

  • maintain joint range of movement
  • prevent contractures
  • reduce muscle stiffness and increase flexibility
  • maintain muscle strength
  • improve sense of well-being and quality of life9

2. Advice and training to the person, their family and care providers on:

  • positioning to support the head, trunk and limbs of the persons with MND
  • regular re-positioning for people unable to reposition themselves
  • safe transfer and lifting techniques to prevent joint dislocation and soft tissue injury especially of the shoulder
  • prevention of pressure sores related to non-invasive ventilation (NIV) masks
  • Passive and assisted range of motion exercises to help maintain joint movement and prevent pain caused by immobility or joint stiffness

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.

Take home message

  • Pain can occur at any stage including early on
  • Not everyone with MND will experience pain
  • Pain may occur as a result of a physical reason or injury
  • Psychological issues may exacerbate your pain experience
  • If you experience any pain or discomfort talk to your healthcare team so that a personalised management plan can be implemented as soon as possible

More resources

MND Association of England, Wales and Northern Ireland, booklet: Managing pain: information for people with or affected by MND or Kennedy’s disease
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