Question

Jerking movements are waking me up. Like most people with ME/CFS, I have major problems with sleep – especially getting to sleep and waking in the night. This leads to night after night of waking up feeling completely unrefreshed. I’ve also had problems in the past with what my doctor calls ‘restless legs’ – which have also kept me awake at night. I’ve now developed some rather frightening jerking movements in my legs. My doctor says these are called myoclonic jerks. Is this something that is also linked to ME/CFS? And is there an effective form of treatment?

Answer

Myoclonus is the medical name for these type of acute muscular spams. They are probably related to over-excitability in the nervous system – which also supplies the muscles. Over-excitability in the nerves supplying the muscles can then cause sudden involuntary jerking movements in individual muscles, or groups of muscles. When these spasms occur at night they are called nocturnal myoclonus

Most people with ME/CFS have some form of sleep dysfunction resulting in unrefreshing sleep. Common sleep complaints in ME/CFS include difficulty falling asleep, hypersomnia (extreme sleepiness), frequent awakening, intense and vivid dreaming, restless legs, and nocturnal myoclonus (night-time muscular spasm).

Although myoclonus can occur in ME/CFS, this is something that you need to discuss with your GP – because there are other possible neurological causes as well. So it may need to be investigated further in some circumstances, especially when the problem is becoming more frequent or severe.

Simple self-help solutions include relaxation/meditation techniques, heating or warming the affected area and massage. Some people report that magnesium supplements are helpful – as they can be with restless legs.

There are also some prescription-only drugs that can help to calm down the nervous system for this type of symptom – tranquillisers like clonazepam and anticonvulsant drugs. Their use could be discussed with your GP. However, these sort of drugs need to be used with caution in ME/CFS, especially those that cause sedation.

These drugs are referred in more detail in the Treatment section of the ME Association Clinical & Research Guide (also known as the ‘purple book')

More detailed information on myoclonus: https://www.ninds.nih.gov/myoclonus-fact-sheet

The ME Association has free information leaflets covering the management of sleep disturbance, restless legs syndrome and Circadin/melatonin – a drug that is sometimes used for more severe sleep disturbances.