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:
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:
Your healthcare team may provide advice around:
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.
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