Page updated: 12 May 2021

Sleep and its importance

It may seem obvious that sleep is beneficial. Even without fully grasping what sleep does for us, we know that going without sleep for too long makes us feel terrible, and that getting a good night's sleep can make us feel ready to take on the world.

Scientists have gone to great lengths to fully understand sleep's benefits. In studies of humans and other animals, they have discovered that sleep plays a critical role in immune function, metabolism, memory, learning, and other vital functions.

Coping with a chronic illness or health condition can be stressful. Nearly all chronic illness results in some level of disruption to “normal" daily life and routines.

Another all-too frequent problem for people with chronic health problems is poor and insufficient sleep. The sleep problems associated with illness is an aspect of health management and treatment that is not discussed.

A sleep survey conducted by Patients Like Me included 5,256 patient-members with a range of health conditions, and many reported chronic difficulties with sleep:

  • 30% of respondents said they “rarely" or “never" got a good night's sleep.
  • 53% of those who believed they had a sleep problem had been dealing with their sleep difficulty for at least a year.

It is not surprising that people coping with illness would report difficulties with sleep. The relationship between sleep and pain is a complicated one.

Pain can create significant challenges to sleep, making it difficult to fall asleep and hard to stay asleep. At the same time, being short on sleep can make us more sensitive to pain. (CBT is useful to help deal with nocturnal pain disrupting sleep).

Many medications also can interfere with sleep. Some common prescription and over-the-counter medications, including anti-depressants, blood pressure medication, and antibiotics, can be disruptive to sleep, due to several factors.

The stress and anxiety associated with coping with chronic illness can cause frequent interruptions to sleep, let alone actual symptoms, such a fatigue which may have a negative impact.

Tired but Wired

Yet the issue of sleep among people with chronic illnesses often remains overlooked. In the Patients Like Me survey, fewer than 15% of respondents had received a diagnosis of insomnia.

However, a majority of respondents reported experiencing symptoms of insomnia, including difficulty falling asleep and difficulty staying asleep, as well as waking feeling un-refreshed.

Scleroderma is associated with several types of sleep disruptions, including restless leg syndrome, research has shown that insomnia and other sleep disorders are significantly under- diagnosed among patients with chronic diseases.

So, what can we do to overcome some of the difficulties?

We spoke to Martin Latham, a clinical nurse specialist at Leeds Hospital Sleep Service. He recommends a few hints and tips to ensure your sleep hygiene routine can be given the best chance of influencing your night-time slumber.

“In order to get the best out of sleep, set yourself regular bed and awake times, (awake time is more important) and try to stick to these times. It is good to ensure your bedroom is cool, dark and we suggest not having a television or any electrical items in the bedroom, apart from your alarm clock as a regulator.(don’t look at the clock during the night when you are awake, only in the final wakening when you know you either wont get back to sleep or you are getting up and out of bed)

Ideally do not drink caffeine 6 hours before bedtime, no alcohol after 8pm and some reports (3) have shown a benefit to bathing or showering before bed to help induce sleep, but you should give your body enough time to cool down afterwards.(Optimal lowered temperature for the release of Melatonin the sleep hormone) Time this about an hour and a half before you want to go to bed so your body is cool dry and ready for sleep. Daytime naps are alright between 2pm – 5pm (no later than 4pm in the afternoon and should last between 30 or 90 mins) limit them to no more than 40 minutes and set your phone or kitchen timer to wake you and get you back up, otherwise this can have a knock-on effect into the night-time routine." (will reduce the sleep drive)

Sleep Apnoea

This is when people frequently stop breathing during sleep. The episodes can last for several seconds (per hour of sleep) or longer. It results in unrefreshing sleep which can cause daytime sleepiness and fatigue. It is associated with many diseases, including high blood pressure, obesity, (being obese is a contributary factor in OSA) and heart problems. It is diagnosed with sleep laboratory studies, and typically treated with a CPAP machine, (CPAP is the only gold standard treatment for OSA, oxygen and surgery not recommended as standard treatment options) however other methods may include surgery, oxygen, medications, (for hypertension?) and throat exercises.

Lynne Lister from Leeds shared with us her experience of sleep apnoea and how she now gets a good night's sleep by using a machine.

“I always had very disturbed sleep and snoring was also a big problem (for my husband!), along with falling asleep during the day at the drop of a hat. I always thought that was down to having scleroderma, but apparently not".

My sleep apnoea started about 15 years ago, I was told that I stopped breathing in my sleep and went to see a specialist who said I had mild sleep apnoea". As things progressed, about a year ago I attended a sleep clinic where they gave me a monitor over 24 hours, it registered my sleep patterns,(oxygen desaturations during stages of sleep rather than sleep patterns) then they looked at my results and they said a C PAP machine might help me with my sleep overall.

A C Pap machine is a small machine that is on my bedside table plugged in all the time, you wear a mask that goes over your nose, or you can have a full-face mask if you prefer.

A long tube is attached to the small machine, which is attached to the mask on your face, it took me about 3 weeks to get used to it, but now it is part of my bedtime routine, I do not even know I am wearing it in bed. I now average 7 hours every night on it and the difference it makes is positive.

I wouldn't be without it now and have recommended it to a lot of other people at the support group in Leeds with scleroderma."

With thanks to Martin Latham and Lynne Lister for assisting us with this article.