Question
During the course of my illness I’ve experienced muscle twitching in my legs and sometimes in my arms. The twitching tends to occur when I’m not feeling well or tired. And while this can be annoying it doesn’t normally interfere with what I want to do. I’ve recently started having a similar problem with my eyelids. Is this common in ME/CFS? And is there any form of treatment?
Answer
Twitching or excessive blinking of the eyelids is known as blepharospasm and it’s something that does appear to be more common in people with ME/CFS. However, this is a symptom that can occur in a number of other conditions – including neurological disorders such as Parkinson’s disease. So you should see your doctor before simply concluding that it is linked to ME/CFS. There are also a number of drugs that can cause this symptom as a side-effect. Examples include antihistamines, calcium channel blockers (to reduce high blood pressure) and benzodiazepines (for anxiety).
The cause is probably an upset in the nerve circuits that control eyelid movement. As you say, fatigue or stress can bring it on or make symptoms worse.
Treatment will depend on how severe the symptoms are and whether it is linked to any known condition. Lifestyle changes include reducing stress, improving sleep and cutting down on caffeine-containing drinks.
Drugs are of very limited value here and would not normally be used where symptoms are mild and/or intermittent in the case of ME/CFS. If symptoms are more severe, or the spasm is causing problems with vision, consideration will need to be given to one of the drugs that can be used.
Two options for more severe cases are to inject botulinum toxin into the muscle – this can be repeated every few months – and surgical removal (myomectomy) of some muscle and nerve tissue from the eyelid.
See Also: Muscle twitching/fasciculations
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MEDICAL DISCLAIMER
We recommend that the medical information is discussed with your doctor. It is not intended to be a substitute for personalised medical advice or treatment. You should consult your doctor whenever a new symptom arises, or an existing symptom worsens. It is important to obtain medical advice that considers other causes and possible treatments. Do not assume that new or worsened symptoms are solely because of ME/CFS or Long Covid.

