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Brettschneider and others 2013

Pain in ALS is a frequent symptom especially in the later stages of disease and can have a pronounced influence on quality of life and suffering. Treatment of pain therefore should be recognised as an important aspect of palliative care in ALS.

There is no evidence from randomised controlled trials about the management of pain in ALS. Further research on this important aspect of palliative care in ALS is needed. Randomised controlled trials should be initiated to determine the effectiveness of different analgesics for treatment of pain in ALS.

MND Australia 2014

Pain and discomfort in MND arise as complications of muscle weakness, stiffness and immobility. Pain from pre-existing conditions such as arthritis may be exacerbated by muscle wasting.

Consultation by a palliative care physician and/or team can be helpful in the assessment and management of pain.


  • loss of muscular control to stabilise large joints and maintain spinal posture
  • passive injury to joints when controlling muscles are weak e.g. shoulder joint damage during assisted transfers
  • muscle cramps
  • spasticity
  • skin pressure
  • constipation
  • dependent oedema
  • impaired circulation


  • early referral to a physiotherapist and an occupational therapist
  • careful positioning to support head, trunk and weight of limbs
  • regular repositioning for patients unable to reposition themselves
  • passive limb movements to relieve muscle and joint stiffness
  • allied health professional advice on most appropriate aids, positioning and transferring techniques and pressure relieving equipment
  • complementary therapies such as massage may be helpful


Initially simple analgesics may be effective:

  • paracetamol 1g qid is an appropriate first line analgesic

As a next step, consider:

  • adding a non-steroidal anti-inflammatory drug if there is an arthritic or inflammatory component to pain
  • small initial doses of an oral opioid are often helpful. Morphine is the most versatile drug being available in a number of immediate release forms - liquid, tablet and capsule. Start low e.g. 5mg orally and increase gradually if necessary. The dose may be repeated on a 2 hourly prn basis
  • if regular analgesia is required slow release preparations are the simplest options
  • where oral dosing is not possible and a PEG is available a slow release morphine suspension is available (MS Contin)
  • where oral dosing is not possible and a gastrostomy is not in place but regular analgesia is required consider a fentanyl patch (Durogesic)
  • where oral dosing is not possible and a patch is ineffective or not indicated for some reason subcutaneous injection may be required
  • where the patient is unable to tolerate morphine alternative opioid analgesics are available, oxycodone and hydromorphone, but dosing options are limited compared to morphine
  • almost all side effects of opioids improve with time except constipation. Regular aperients are essential particularly in the population already at risk from constipation. For management of constipation see ‘Constipation’

If you are unsure about opioid dosing options contact a palliative care specialist for further information and advice.

Orrell 2010

Pain is a common problem in ALS/MND, especially in the later stages. Much of this relates to neuromuscular weakness, including the effects of posture and immobility. Severe pain has been reported in up to 20% of patients with ALS/MND.

Management remains common to other conditions including non-steroidal anti-inflammatory drugs and opioids. Cannabis was noted to be used much less frequently in ALS/MND than in other diseases such as multiple sclerosis, AIDS or cancer.

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