Preventing and Managing Pain
July 10, 2023
This article is written with thanks and acknowledgements to the MND Clinic team at Northern Health, and is based upon a health professional webinar they presented for MND Victoria this autumn.
MND affects the neurones (nerves) that control movement, but not the neurones that carry sensory messages, including pain. This means that MND itself does not cause pain, but symptoms of MND can cause pain. There are often a combination of factors that can contribute to pain in MND. Pain can include physical and emotional aspects.
Causes of pain in MND include:
- Muscle cramps/spasms
- Spasticity (overactive muscles)
- Joint stiffness and pain related to difficulty moving and changing position
- Risk of injury to joints related to muscle weakness (e.g. arm weakness: shoulder joint injury)
- Pressure areas related to difficulty changing position
- Pain related to the emotional impacts of living with MND
- Itch
- Neuropathic (nerve) pain
- Headaches relating to breathing problems
- Issues related to previous joint or muscle injuries.
Preventing Pain
The good news is that there are many things that can be done to prevent and manage some types of pain related to MND. Taking a whole team approach including a Neurologist, Allied Health Care Team (including Physiotherapist, Occupational Therapist etc), Nurse and sometimes Palliative Care team can be very helpful in managing pain.
Managing Pain
There are medical treatments for many types of pain in MND. Neurologists and Palliative Care Specialist Doctors can work together to manage pain in people living with MND (not just at end of life). Palliative Care Doctors and Nurses are specialised in treating pain. Some drugs that can sometimes be prescribed in MND:
- Paracetamol
- Anti-inflammatory drugs
- Opioid drugs
- Antidepressant and Anticonvulsant medications can also be used to treat pain.
Regular monitoring allows medications to be adjusted over time to best manage pain and limit side effects. It is important for the healthcare team to assess pain at different times for people living with MND.
If you have a community palliative care service involved, there is often after-hours telephone support that can be very helpful.
If you have swallowing problems, it is still possible to take pain medication. Pain medications can be given by mouth (chewable, dissolving in the mouth, in a liquid, mixed with fluids/foods), via a feeding tube, via a patch worn on the skin or via injections or syringe drivers (portable, battery-operated pump that delivers medication under the skin). Your healthcare team can help advise you about the best way for you to take pain medication.
If speaking is difficult, ask a Speech Pathologist to set up a method so you can communicate if you have pain-letting others know where your pain is, the type of pain and how severe it is.
Complementary Therapies
Some people find that massage and acupuncture can be helpful. It is helpful to look for a qualified therapeutic masseuse with experience working with people diagnosed with MND and other neurological conditions. Click here to view the massage recording on our website.
First Steps
If you have pain, talk with your GP, Neurologist and health-care team. They can assess what is causing your pain and work together with you to come up with a plan to treat your pain.
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