Pain in MND
This information is for health and social care professionals.
Motor neurones do not transmit or modify pain signals, so the disease itself is not inherently painful. However, pain may be experienced as the ability to move reduces.
Pain can significantly interfere with the quality of life of people with MND, because of its impact on activity levels, mood, sleep, relationships, and general enjoyment of life.
Pain in people with MND may be caused by:
- muscle cramps
- mechanical stress on joints from muscle weakness
- skin sensitivity
- occasionally, neuropathic pain.
The following may be considered for prescription by an appropriately qualified professional. For drug dosages please refer to British National Formulary (BNF).
For joint pain:
- Simple analgesia, eg long-acting non-steroidal anti-inflammatory drugs (NSAIDs).
For muscle cramps:
- Consider quinine as first-line treatment for muscle cramps in people with MND.
- If quinine is not effective, not tolerated or contraindicated, consider baclofen instead as a second-line treatment.
- If baclofen is not effective, not tolerated or contraindicated, consider tizanidine, dantrolene or gabapentin.
For muscle stiffness, spasticity or increased tone:
- Consider baclofen, tizanidine, dantrolene or gabapentin.
- If these treatments are not effective, not tolerated or contraindicated, consider referral to a specialist service for the treatment of severe spasticity.
- Opioids may be used for pain relief and can also be used for symptomatic treatment of dyspnoea and coughing. With careful titration, excessive drowsiness and respiratory depression can be avoided - consider morphinebuprenorphine or fentanyl patches.
- Dosage of muscle relaxants should be carefully adjusted to avoid increased weakness and decreased mobility.
- Check whether the patient is taking a statin and consider this being discontinued, as muscle cramps are a frequent side effect.
For neuropathic pain:
- careful positioning to relieve discomfort
- passive exercise programme
- prevention of contractures
- maintenance of joint mobility
- regular review of posture.
- Good skin and pressure care is vital. Someone with MND may be aware when they need to turn or move, but may need help to adjust their position.
- Consider equipment for skin sensitivity relief, such as a bed cradle to relieve the weight of bed clothes, lightweight bed clothing and a pressure-relieving mattress and cushions.
- Advise warm socks for cold feet.
Extra care is needed when lifting, handling and positioning.
- This may largely be related to restricted activity and posture or to intercurrent disease, which should be treated accordingly.
- Attention to posture and seating requires regular assessment by an occupational therapist.
- Compression support stockings, effleurage (light massage) and reflexology may be beneficial.
- Diuretics are rarely helpful as they can promote urinary urgency and electrolyte disturbance.
- In some areas, referral to the lymphodema service may be an option.