Exercise & diet advice
“I often feel as though I’m paralyzed and absolutely incapable of movement.”— BE, HyperPP
Myotonia symptoms are elicited by different triggers according to the type of NDM you have.1,3 If you have Thomsen or Becker myotonia congenita, muscle stiffness is likely to be worse when you first move after a period of inactivity, whereas the opposite is true with paramyotonia congenita, where stiffness increases with continued movement.1 With hyperkalaemic periodic paralysis, myotonia can be triggered by rest following exercise.1 Many people with NDM find that cold will trigger a myotonic “episode”.4 Work with your healthcare team to understand the type of NDM you have and how you can safely increase the amount of activity you are doing.
Aerobic exercise, such as swimming, cycling and walking are encouraged to improve fitness, and resistance training is not thought to be harmful for people with NDM, but sudden forceful contractions should be avoided.2,4
Patients who find that myotonia is painful for them or who experience fatigue, may find it more difficult to be active5 and should seek specific help for these symptoms from their healthcare team.
If during or after exercising, you experience unexpected pain, shortness of breath, palpitations, dizziness, or a change in symptoms, you should stop and contact a healthcare professional.
People with sodium channel myotonia and dyskalaemic episodic paralysis can be sensitive to potassium in their diet, they may find that avoiding potassium-rich foods can help reduce myotonia symptoms.4
- Hahn C, Salajegheh MK. Iran J Neurol 2016;15:46–53
- Stunnenberg BC, et al. Muscle Nerve 2020;62:430-444
- Matthews E, et al. Brain 2010:133; 9–22
- Jitipolmard N, et al. Curr Treat Options Neurol 2020;22:34
- Trip J, et al. J Neurol Neurosurg Psychiatry 2009;80:647-652
UK-NDM-2202-00011 June 2022