MND Australia
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Pain and MND

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

MND itself does not cause pain. However, MND does cause muscles to become weak and stiff, and get smaller. 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 and and can disturb your sleep, relationships and general enjoyment of life.

Talk to your healthcare team about any pain you have. When you talk openly about your pain symptoms, doctors can prescribe the right strategies or medications to help relieve discomfort.

People living with MND may have pain for a range of reasons. These include:

  • muscle spasms and cramps
  • spasticity (tight or stiff muscles)
  • lack of mobility
  • not being able to reposition yourself easily
  • head-drop (linked to weakness of the head and neck muscles)
  • weakness and wasting of muscles which leads to less support for joints and posture
  • lack of support to the limbs when changing position, which might cause injury
  • pressure sores
  • constipation
  • morning headaches due to poor sleep
  • pre-existing conditions like arthritis.

Pain varies from person to person. Mental health and wellbeing can also impact on the way you feel pain.

If you are having pain and/or discomfort talk with your healthcare team. They will be able to work out the cause of your pain and what might help.

People who can help include:

  • a physiotherapist, who can help identify the causes of pain and give you exercises or strategies to manage it
  • an occupational therapist (OT) who can give you advice abound assistive equipment for independence and comfort (such as raiser-recliner chairs, hospital-style beds, or head/neck supports)
  • an orthotist, who can advise on splints to support limbs
  • a counsellor or psychologist for emotional and psychological support
  • a respiratory specialist to help manage problems with breathing (which can cause headaches)
  • a general practitioner (GP) or dietitian can advise on ways to manage constipation
  • a GP, neurologist, and other specialists can prescribe medications to reduce pain. 

Some people also find massage, warm packs and relaxation activities helpful.

If you have trouble finding health professionals to manage your pain, get in touch with your state MND Association. They may be able to refer you to suitable options in your local area.

Learn more in our multidisciplinary care factsheet

Read the full Pain management and MND factsheet