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

Pain and MND

MND affects the nerves that carry messages from your brain and tell your muscles what to do. 

As the nerves gradually deteriorate, the messages can’t get through. The muscles then become weak, stiff and begin to waste. This can result in pain and discomfort.

Pain may come and go at all stages of the disease. It can interfere with how you live your life, how you feel in yourself, your sleep, relationships and general enjoyment of life.

Not everyone with MND will experience problems with pain, but if you do getting help with pain early can make a difference.

MND itself does not cause pain but there are many reasons why people living with MND may experience pain. These include:

  • Weakness and wasting of muscles meaning less support for joints and posture
  • Lack of support to the limbs when repositioning which might cause injury
  • Not being able to reposition yourself easily
  • Muscle cramps 
  • Spasticity – which is abnormal muscle contractions
  • Pressure sores 
  • Constipation 
  • Headaches due to breathing muscle weakness
  • Pre-existing conditions

Pain varies from person to person and mental health can also impact on your pain experience. If you are experiencing pain and/or discomfort it is important to consult with your general practitioner (GP), neurologist, specialist MND clinic or palliative care physician to work out the cause of your pain and how to help.

If you are having difficulties finding the services you need, don’t forget to talk with your state MND association regional advisor or NDIS coordinator of support. They are there to guide you. This may include referral different members of your healthcare team, including:

  • A physiotherapist for assessment to help identify the causes of pain and appropriate management options, which may include exercises
  • An occupational therapist for advice around assistive equipment, comfortable beds and chairs and help to maintain independence for as long as possible
  • An orthoptist for splints to support limbs
  • A counsellor or psychologist for emotional and psychological supports
  • A respiratory specialist to help manage problems with breathing (this can contribute to headaches)

Learn more in our multidisciplinary care factsheet

Your healthcare team may provide advice around:

  • Medications
  • Exercise to move your joints and reduce stiffness
  • Positioning (and repositioning) for comfort
  • Safe repositioning and lifting techniques for the person with MND, their family and care providers
  • Assistive equipment
  • Emotional support
  • Help with your breathing
  • Other therapies

Some people also find other techniques like massage, warm packs and relaxation activities helpful. It is important to discuss your needs and preferences with your healthcare team so that interventions to help you manage pain and discomfort work for you and your carers.

Read the full Pain management and MND factsheet

For more information, support and referral contact your GP, neurologist, MND Clinic, palliative care service or state MND Association.

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