Not everyone with MND has problems with pain, but if you do, getting help early can make a real difference.
MND causes muscles to become weak and stiff, and get smaller. This can result in pain and discomfort.
Pain may come and go at all stages of the disease. It can interfere with how you live your life and and can disturb your sleep, relationships and general enjoyment of life.
Talk to your healthcare team about any pain you have. When you talk openly about your pain symptoms, doctors can prescribe the right strategies or medications to help relieve discomfort.
People living with MND may have pain for a range of reasons. These include:
muscle spasms and cramps
spasticity (tight or stiff muscles)
lack of mobility
not being able to reposition yourself easily
head-drop (linked to weakness of the head and neck muscles)
weakness and wasting of muscles which leads to less support for joints and posture
lack of support to the limbs when changing position, which might cause injury
pressure sores
constipation
morning headaches due to poor sleep
pre-existing conditions like arthritis.
Pain varies from person to person. Mental health and wellbeing can also impact on the way you feel pain.
If you are having pain and/or discomfort talk with your healthcare team. They will be able to work out the cause of your pain and what might help.
People who can help include:
a physiotherapist, who can help identify the causes of pain and give you exercises or strategies to manage it
an occupational therapist (OT) who can give you advice abound assistive equipment for independence and comfort (such as raiser-recliner chairs, hospital-style beds, or head/neck supports)
an orthotist, who can advise on splints to support limbs
a counsellor or psychologist for emotional and psychological support
a respiratory specialist to help manage problems with breathing (which can cause headaches)
a general practitioner (GP) or dietitian can advise on ways to manage constipation
a GP, neurologist, and other specialists can prescribe medications to reduce pain
a palliative care doctor, nurse, or specialist team can work with you to make a plan that fits all of your ongoing needs, such as pain relief.
Some people also find massage, warm packs and relaxation activities helpful.
If you have trouble finding health professionals to manage your pain, get in touch with your state MND Association. They may be able to refer you to suitable options in your local area.
Pain Australia: What is Pain?
Palliative Care Australia: Facts about morphine and other opioid medicines and Massage therapy in palliative care
Sources
1. Naomi Hurwitz, Ratko Radakovic, Eleanor Boyce & Guy Peryer (2021) Prevalence of pain in amyotrophic lateral sclerosis: a systematic review and meta-analysis, Amyotrophic Lateral Sclerosis and Frontotemporal Degeneration, 22:7-8, 449-458, DOI: 10.1080/21678421.2021.1892765
2. Chiò A, Mora G, Lauria G. Pain in amyotrophic lateral sclerosis. Lancet Neurol. 2017 Feb;16(2):144-157. doi: 10.1016/S1474-4422(16)30358-1. Epub 2016 Dec 8. PMID: 27964824
3. Bernadette Wigand, Ina Schlichte, Stefanie Schreiber, Johanna Heitmann, Thomas Meyer, Reinhard Dengler, Susanne Petri, Aiden Haghikia, Stefan Vielhaber & Susanne Vogt (2021) Characteristics of pain and the burden it causes in patients with amyotrophic lateral sclerosis – a longitudinal study, Amyotrophic Lateral Sclerosis and Frontotemporal Degeneration, DOI: 10.1080/21678421.2021.1962354
4. Ylva Åkerblom, Birgitta Jakobsson Larsson, Lena Zetterberg & Pernilla Åsenlöf (2020) The multiple faces of pain in motor neuron disease: a qualitative study to inform pain assessment and pain management, Disability and Rehabilitation, 42:15, 2123-2132, DOI: 10.1080/09638288.2018.1555615
5. Wallace VC, Ellis CM, Burman R, Knights C, Shaw CE, Al-Chalabi A. The evaluation of pain in amyotrophic lateral sclerosis: a case controlled observational study. Amyotroph Lateral Scler Frontotemporal Degener. 2014 Dec;15(7-8):520-7. doi: 10.3109/21678421.2014.951944. Epub 2014 Sep 10. PMID: 25204842
6. Lau Fiona S, Brennan Frank P, Gardiner Matthew D, Multidisciplinary management of motor neurone disease, Australian Journal of General Practice, VOL. 47, NO. 9, SEPTEMBER 2018
7. Hobson EV, McDermott CJ. Supportive and symptomatic management of amyotrophic lateral sclerosis. Nat Rev Neurol. 2016 Sep;12(9):526-38. doi: 10.1038/nrneurol.2016.111. Epub 2016 Aug 12. PMID: 27514291
8. Ng L, Khan F, Young CA, Galea M. Symptomatic treatments for amyotrophic lateral sclerosis/motor neuron disease. Cochrane Database Syst Rev. 2017 Jan 10;1(1):CD011776. doi: 10.1002/14651858.CD011776.pub2. PMID: 28072907; PMCID: PMC6469543.
9. National Institute for Health and Care Excellence (NICE) 2016, ‘Motor neurone disease: assessment and management’, retrieved from https://www.nice.org.uk/guidance/NG42/chapter/Recommendations#managing-symptoms
10. Shoesmith et al, Canadian best practice recommendations for the management of amyotrophic lateral sclerosis,Christen Shoesmith, Agessandro Abrahao, Tim Benstead, Marvin Chum, Nicolas Dupre, Aaron Izenberg, Wendy Johnston, Sanjay Kalra, Desmond Leddin, Colleen O’Connell, Kerri Schellenberg, Anu Tandon, Lorne Zinman CMAJ Nov 2020, 192 (46) E1453-E1468; DOI: 10.1503/cmaj.191721