Managing the symptoms of NDM
Patients with NDM may experience stiffness, weakness or pain in different areas of their bodies; one person’s symptoms may not be the same as
another.1,2 There is currently no cure for NDM, however most people can adapt the way they do things to manage their symptoms.
“I had to continually think up excuses. Later, I had to be ‘one step ahead’ in order to be able to go up the stairs alone with no one watching, especially not my school friends.”— SL, Thomsen myotonia
Myotonia triggers are different for different forms of NDM and an individual’s symptoms may also vary from day to day.1 Understanding when your NDM symptoms are better or worse may help you manage them. Try tracking your symptoms in a diary to unlock any patterns. Finding ways to avoid triggers or doing more of the things that keep your symptoms at bay (e.g., making sure muscles are warm before using them) may help reduce the impact of NDM on your day-to-day life. Changing the way you exercise or avoiding some foods might also help.
If symptoms continue to affect your daily life, other options may be needed, and you should discuss these with your healthcare team.2 A daily symptom diary will also help your doctor understand how your symptoms impact your daily life. Patients who find that myotonia is painful for them or who experience fatigue, may find it more difficult to be active3 and should also seek specific help for these symptoms from their healthcare team. Additional sources of support for patients and information on specialist centres are available on this site.
- Hahn C, Salajegheh MK. Iran J Neurol 2016;15:46–53
- Stunnenberg BC, et al. Muscle Nerve 2020;62:430-444
- Trip J, et al. J Neurol Neurosurg Psychiatry 2009;80:647-652