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How pulmonary fibrosis affects sleep

There are a number of natural changes to breathing that happen to everyone during sleep. Our breathing slows down and we do not take in or expel as much air as when we’re awake. At the same time, breathing needs more work as our muscles relax, the upper airway narrows and respiratory muscle activity is reduced.

If you have scarring in your lungs, it’s harder to deal with these natural changes and you’re more likely to wake up feeling breathless. Find out more about managing breathlessness.

Coughing, wheezing and heartburn may also wake you up at night. Sleeplessness may also be a side effect of the medications you’re taking.

10 tips for better sleep

As well as making sure your pulmonary fibrosis is being managed properly, there are a number of things you can do to improve your sleep:

  1. Position yourself for sleep. Ensure your head is higher than your body and lie on your side. Use pillows or a wedge to keep you there as this opens up the airway. Sleeping with your head raised may also reduce the symptoms of acid reflux, which can affect your sleep.
  2. Keep to a regular sleep schedule. A daytime nap is fine but avoid long naps as this can make it harder to sleep at night
  3. Avoid caffeine and alcohol at least six hours before bed. A light (rather than heavy) evening meal is also recommended
  4. Have a hot bath. Bathing 90 minutes before bed, or soaking your feet in hot water, can help you fall asleep.
  5. A quiet, clean and tidy bedroom encourages relaxation. Keep noise out and the temperature to around 20 degrees.
  6. Reduce ‘blue screen’ time two hours before bed. TV, tablets, phones and computer screens reduce the production of melatonin, the sleep hormone.
  7. Take some gentle exercise. It’s best to exercise around mid-morning as doing it too late at night disrupts sleep.
  8. Try to get plenty of exposure to daylight. It’s important for the circadian rhythm, improving daytime wakefulness and night-time sleep.
  9. Learn relaxation techniques. These can help you calm both your body and your mind when it’s time to go to sleep.
  10. Talk to your medical team. If insomnia is a side effect of a drug you’re taking,  your medical team may be able to adjust your medication to help.

Obstructive sleep apnoea

Many people with pulmonary fibrosis develop obstructive sleep apnoea – a breathing problem that happens when you sleep.

Symptoms at night include snoring, pauses in breathing when asleep, struggling to breathe and tossing and turning.

Daytime symptoms may include waking up sleepy and feeling groggy and less alert, feeling depressed or irritable, having poor co-ordination or suffering from heartburn.

Sometimes your partner might be more aware of your snoring and pauses in your breathing than you are.

If you think you may be suffering from obstructive sleep apnoea, talk to your GP. They will ask about your symptoms, your health and your medical history, and about how sleepy you are when awake.

Andy’s story

After I was first diagnosed, I was constantly tired and was tested for Obstructive Sleep Apnoea. I had it and it was waking me up 14 times every hour! Some of that was down to IPF and some to putting on extra weight. I now use a CPAP (continuous positive airway pressure) machine which increases the air pressure in your throat to stop the airways collapsing in the night. I’m also trying to lose weight and exercise more.  So, my tips are – think about your weight and exercise, and visit your GP to get tested if you think you could have OSA

Sleep advice from patients and carers

My top tips are to get out and take a walk every day; don’t eat after 7pm at night; cut out all alcohol and don’t watch the tv news or go on your computer after 7pm.
I always fall asleep without too much trouble but invariably wake up around 4am. Listening to the radio – Radio 4 or 4 Extra – soon sends me off. I also find keeping a fan on and the air moving helps a lot as well.
My husband is on oxygen and has to sleep with a cannula. It did drop out at night and was uncomfortable to wear. But when he started on chemo the cannula was much better with longer prongs and softer tubing. This really is more comfortable and hasn’t dropped out once yet.
My top tip is to sleep with your head and chest inclined at about 30 degrees. I use four pillows but some people get a bed they can incline.

Why not go along to your local support group to share experiences and advice with others?

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