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Movement and muscles

Pain

Pain is common in ALS/MND, often related to how the body is being held, moved or supported, and it is treatable rather than something to put up with.

Still being checked

What this is

Pain is common and often under-raised, partly because people expect ALS/MND not to be painful. It often has a cause that can be found and worked on: stiffness, a joint that has become stuck, pressure from sitting or lying in one position, or cramping. Because the cause guides the relief, describing the pain carefully, including where it is and what it feels like, is one of the most useful things you can do.

What people often describe

  • A shoulder that has become painful, often on the weaker side
  • Aching from sitting or lying in one position for too long
  • Pain that is worse at night, or that interrupts sleep
  • Discomfort that is hard to name, and hard to raise because it feels minor

Important distinctions

  • Cramps are managed differently from other kinds of pain. If a sudden painful tightening is the main thing you notice, start there.

  • Stiffness and pain are often talked about together, and a team will usually look at both rather than one alone. If stiffness is the thing you notice most, start there.

What may help

This page lists options that are used for this problem and says where each one comes from. It is not a ranking, it is not a recommendation, and it is not personalised to you. What suits you is a decision for you and your care team.

Practical and self-management

Things people do themselves, or with whoever is helping them.

  • Positioning

    Good positioning is one of the first things a team looks at, because so much pain here comes from how the body is being held.

    Highlighted: shows the sources for this statement

    Discuss with

    Compass explains

Allied health

What a therapist can assess, teach or adjust.

  • Stretching and range-of-motion exercises

    Keeping joints moving is aimed at the stiffness and contractures that become painful later. A shoulder is the joint people most often notice.

    Discuss with

    Compass explains

  • Massage and soft-tissue approaches

    Massage and soft-tissue approaches are used for comfort, alongside the measures that address the cause.

    Discuss with

    Compass explains

Medicines

Named here only where a guideline names them for this problem.

A medicine is named here only where a published guideline names it for this problem, and the guideline's own words are shown beside it. Compass does not advise on doses, and does not say which medicine is right for anyone.

  • Pain-relieving medicines

    Medicines are part of how pain is treated, and which ones depends on what is causing it. Palliative care teams are the specialists in pain that is harder to settle, and can be involved at any stage rather than only at the end of life.

    Highlighted: shows the sources for this statement
    • Which option suits you depends on what is causing the pain and on what else you take, so describing the pain carefully is what guides the choice.

    Discuss with

    Compass explains

Equipment

Devices and physical aids.

  • Riser recliner chair

    Supportive seating, cushions and mattresses, so that pressure is spread rather than concentrated. Pressure care is part of the same conversation.

    Discuss with

    Compass explains

When to get this looked at sooner

New or worsening pain is one of the changes worth raising between appointments rather than waiting for the next one.

Highlighted: shows the sources for this statement

Who may help

Where Compass explains this

Questions

Cards

Other problems

Words explained

About this page

This page lists options that are used for this problem and says where each one comes from. It is not a ranking, it is not a recommendation, and it is not personalised to you. What suits you is a decision for you and your care team.

Evidence for this page

The sources behind the statements on this page, and where to find them. Compass does not decide which option is right for anyone.

  1. Statement 1 of 3. Good positioning is one of the first things a team looks at, because so much pain here comes from how the body is being held.

    • Supports this. Guidelines for the physiotherapy management of MND — Irish Motor Neurone Disease Association · Clinical guideline · 2014

      An MND physiotherapy guideline lists reducing pain among what good alignment in sitting or lying can help with.

      “Positioning of the patient in a good alignment while sitting or supine can decrease abnormal muscle tone; prevent or reduce spasticity, contractures, and pain; prevent the development of pressure sores; and minimise the effort required for respiration.”

      Key recommendations, 3.4b.1O

      Link checked August 2026

  2. Statement 2 of 3. Medicines are part of how pain is treated, and which ones depends on what is causing it. Palliative care teams are the specialists in pain that is harder to settle, and can be involved at any stage rather than only at the end of life.

    • Supports this. Palliative care — World Health Organization · Organisation · August 2020

      The World Health Organization describes assessing and treating pain as core to palliative care, which in MND is available alongside other treatment rather than only at the end of life.

      “It prevents and relieves suffering through the early identification, correct assessment and treatment of pain and other problems, whether physical, psychosocial or spiritual.”

      Key facts

      Link checked August 2026

    • Qualifies this. Efficacy of pain management strategies in adults with Amyotrophic Lateral Sclerosis (ALS): A Systematic Review — Neurological Sciences · Research review · July 2024

      A systematic review of pain management in ALS reports that trials focused on this question are limited, so practice rests more on general pain management than on ALS-specific evidence.

      “Clinical trials focusing on pain management strategies for ALS patients are limited.”

      Abstract

      Link checked August 2026

  3. Statement 3 of 3. New or worsening pain is one of the changes worth raising between appointments rather than waiting for the next one.

    • Supports this. NICE MND guideline — NICE · Clinical guideline

      Republished from the Compass answer "How do I know when to ask for help?", where this statement is already mapped to this source.

      “Ensure arrangements are in place to trigger an earlier multidisciplinary team assessment if there is a significant change in symptoms identified by the person, family members and/or carers (as appropriate), or healthcare professionals.”

      1.5.7

      Link checked August 2026