The neurones carrying sensory messages of pain, touch, heat, cold and pressure from the skin and deeper tissues back to the spinal cord and brain are unaffected.

However, while most people experience little or no pain at any stage of the illness, others may experience some pain or discomfort such as:

  • cramps in the muscles, especially in the legs. These are most common in the early stages of the disease and may occur with exercise or at rest
  • pain and stiffness in joints can occur because weakness of the muscles around a joint allows excessive strain to be transmitted directly through the ligaments and soft tissues. The shoulder joint is most commonly affected. Care should be taken not to pull on the arms when assisting a person with MND to change the position of their body. It is also important not to leave a person's weak arm hanging unsupported
  • 'frozen shoulder' - where movement at the shoulder causes pain - can occur through inactivity of muscles of the shoulder pain in the muscles of the neck, shoulder, hip and knees can occur with the loss of normal postural control, which occurs when muscles are weak. The discomfort is characteristically improved by postural or positional change. This problem is worse in people who are too weak to readily move or reposition themselves
  • carers need to know how and when to assist the person with MND to readjust their position in order to minimise this problem. Electrically operated beds and chairs and special cushioning can assist the person with MND improve their mobility and comfort

Pain can be treated using a number of physical measures. These treatments are best accessed with the help of a physiotherapist.

Special cushions and mattresses can provide extra ‘padding' and pressure relief, especially if the person has lost weight. Gentle passive exercise of those limbs which are too weak to be moved by the person's own efforts can prevent pain arising from stiff shoulders and other joints. Warm packs and baths are often useful, but care needs to be taken with temperature control.

The general practitioner, neurologist or palliative care specialist can prescribe a range of medications for pain.

Relaxation therapy can be of great value especially if breathing or swallowing problems are also being experienced. It is possible that someone from the health or palliative care team may be able to teach a few simple relaxation techniques. Some people find commercially available relaxation tapes helpful. Others may find acupuncture useful in the treatment of pain. People are encouraged to check with their doctor before embarking on additional treatments to those being given already.

Pain and MND (


Upcoming Living with MND Events

See us on YouTube

Couldn't get to Ask the Experts or the SIG workshop?

Catch up at the MND NSW YouTube Channel.

yt logo rgb light