Muscle weakness and pain

Muscle weakness in MND is caused by the progressive loss of motor neurones, leading to reduced muscle strength and control.

Weakness often affects movement and mobility, particularly in the arms, hands and legs. It may also affect posture and balance as trunk and neck muscles become weaker.

MND can also affect speech, swallowing and breathing, which are covered in more detail in other sections.

Symptoms often begin in one area and gradually spread to other regions over time.

Muscle wasting and fatigue commonly occur alongside weakness. Pain and discomfort may also occur, often related to muscle stiffness, immobility or changes in posture.

Early signs may be subtle and can vary depending on the area affected.

You may notice:

• reduced grip strength or difficulty with fine motor tasks, such as turning a key or opening jars
• trips, falls or changes in walking
• difficulty lifting or holding objects
• fatigue during everyday activities
• changes in posture or head control.

Over time, weakness may lead to increasing difficulty with mobility and self care.

Muscle weakness can affect a person’s ability to carry out everyday activities.

This may include:

• walking and mobility
• dressing and personal care
• eating and drinking
• communication
• maintaining posture and comfort.

Loss of function can affect independence, confidence and wellbeing. It may also increase fatigue and contribute to discomfort or pain.

Early support and regular review are important.

• involve the multidisciplinary team, including physiotherapy and occupational therapy
• assess function, mobility and safety regularly, inlcuding risk of falls
• consider equipment and adaptations to support independence
• support energy conservation and pacing
• consider and address pain, including discomfort related to positioning, immobility or muscle stiffness
• discuss changes with the person and those close to them.

Needs are likely to change over time, and support should be adapted accordingly.

A range of approaches may help maintain function, support independence and improve comfort:

• physiotherapy to support movement, stretching and positioning
• occupational therapy to support daily activities and identify appropriate equipment and adaptations
• orthotist input to assess and provide orthotic support where needed.

Mobility and positioning support may include:

• mobility aids, such as walking aids and wheelchairs, introduced as needs change
• orthotics, for example ankle foot orthoses, to support stability and walking
• seating and positioning equipment to support posture and comfort.

Early discussion and timely provision of wheelchairs can help maintain independence, reduce fatigue and support participation in daily life.

Adaptations to the home environment may include:

• grab rails or stair rails
• changes to bathroom or access arrangements
• equipment to support transfers and daily activities.

The focus is on maintaining function, safety and quality of life.

You may find the following resources helpful:

Occupational therapy for MND guide for professionals

Wheelchairs information sheet and pathway

Pain in MND information sheet

Managing muscle problems infographic

Information on mobility and movement for people with or affected by MND

You can find further guidance on symptom management and support across the Management of MND section.