We can never have enough sleep!

Although some of us might burn the midnight oil because of the demands of daily life, sleep isn’t just for helping us feel rested: it actually repairs our bodies. When you have a neuromuscular condition, conserving energy and making sure your muscles and bones have adequate time to repair themselves is crucial, especially when it comes to pain management. A trio of researchers (Corrado Italo Angelini, Gabriele Siciliano and Carl Ansevin) at universities in Italy and the USA noted the importance of sleep for people with neuromuscular disorders in an editorial titled ‘Sleep disorders in neuromuscular diseases: treatable conditions: the evolving scenario of sleep in neuromuscular disorders.’

In this article, Angelini et al reviews several studies conducted with people who have neuromuscular conditions as well as problems with sleep. They explain that neuromuscular conditions affect motor neurons: cells in our nervous system responsible for controlling voluntary and involuntary muscle movements. When we sleep, our bodies replenish stores of ‘fuel’ such as glycogen, allowing us to move with more energy when we’re awake. Sleeping is also a time when we use very little energy, meaning it gets saved up for the next day. Because neuromuscular conditions have a big impact on energy levels, muscle  function and pain, getting high-quality sleep is vital in maintaining and improving your health, wellbeing, and quality of life.

The researchers discuss a paper by Abati et al. which reviews sleep patterns in Spinal Muscular Atrophy (SMA). While this paper spends a lot of time discussing ventilator use, an important statement is made: that there isn’t much knowledge around sleep disorders in people with SMA, even though there is a link between sleep disorders and respiratory function. This is interesting because of previous ideas discussed in our Research Unravelled series. It seems that factors which are important to quality of life (e.g., mental health, social life, etc.) are considered ‘less important’ or even irrelevant compared to the primary symptoms of a neuromuscular condition. While sleep is deemed something clinical which needs to be investigated, the lack of research on the topic speaks to it being less of a priority than other neuromuscular research.

This theme is continued when reviewing an article by Massuco et al. about a pair of twins with Charcot-Marie-Tooth (CMT) disease. The twins presented with sleep-disordered breathing, including nocturnal hypoventilation (not getting enough oxygen while sleeping) and phrenic nerve damage (injury to the diaphragm, which is important in breathing). It is suggested that sleep apnea may be something which people with CMT are more likely to experience. Hoxhaj et al. comes to a similar conclusion in their analysis of excessive daytime sleepiness in people with myotonic dystrophies type 1 and 2 (DM1 and DM2). Their study showed problems with Rapid-Eye Movement (REM) and Non-Rapid Eye Movement (NREM) types of sleep, the former of which is important for brain functioning, and the latter of which is crucial for our immune systems and repairing our bodies.

Angelini et al. concludes that there is a clear and underresearched link between neuromuscular conditions and sleep disorders. This is because neuromuscular conditions lead to (or present with symptoms of) sleep apnea, a lack of oxygen while sleeping, muscle cramps, pain, and insomnia. This conclusion may be frustrating to read when you have a neuromuscular condition, as difficulties with sleep are often discussed in neuromuscular support groups and other non-clinical spaces. However, when a paper gets written describing something which is well-known to a community, it helps people without insider knowledge (such as medical professionals without neuromuscular conditions) understand your experience better. This helps them develop more effective treatments and have more empathy when it comes to supporting their patients.

Keeping the conversation going around the lived realities of neuromuscular conditions is imperative to championing the community’s voice. Part of the work we do at Pathfinders involves demystifying research which affects the neuromuscular community. Do you have a research paper or topic you’d like to see covered? If so, get in contact with us at quinn@pathfindersalliance.org.uk. 

Written by Quinn Clark

References:

Angelini CI, Siciliano G and Ansevin C (2024) Editorial: Sleep disorders in neuromuscular diseases: treatable conditions: the evolving scenario of sleep in neuromuscular disorders. Front. Neurol. 15:1448486. doi: 10.3389/fneur.2024.1448486