How pulmonary fibrosis robs people of sleep, and what to do about it
Symptoms and side effects can make getting a good night's sleep challenging
Good morning, readers. If it’s not morning when you’re reading this, let’s pretend for a moment that it is. You just rolled out of bed, made a hot, caffeinated beverage, and now you’re checking on the latest from Pulmonary Fibrosis News. Cozy.
Now, raise your hand if you got a good night’s sleep last night. Do you feel rested? Or are you ready to crawl back into Fluffy Mountain for a few more hours?
Chances are, since you’re here, you’re not raising your hand. Today is World Sleep Day, and I spent all week talking to PF community members about the things that make sleeping with a respiratory disease so tricky. I also rounded up the top tips that might make it easier to get some Z’s, since the message of the day is “sleep is essential for health.”
Unfortunately, the symptoms of pulmonary fibrosis (PF) don’t always go to bed at night. Some folks I talked to said that their racking cough persisted even at night, keeping them awake.
Another symptom that is not only exhausting, but also sometimes dangerous is shortness of breath. Lying flat can make it harder to take a deep breath, and since breathing slows down when we sleep, it’s no surprise that some people report low oxygen saturation and breathlessness during the night.
Chronic pain and joint stiffness can make it hard to fall or stay asleep. Every single person I talked to said they were advised by doctors to sleep with their head elevated. This is meant to help prevent breathlessness and acid reflux, which can be closely associated with idiopathic PF. But sleeping on an angle can be uncomfortable.
Lastly, the inability to get adequate exercise due to PF can make it harder to sleep. Routine movement helps regulate circadian rhythms, and exercise helps tire us out so that we sleep better. If PF makes it hard to exercise, patients miss out on that helpful tool for better sleep.
My mom, Holly, shared that she struggled with insomnia caused by mental distress both before and after her lung transplant.
While she was battling IPF, she would wake up with terrible anxiety about her disease. She would fret over decisions about her care and what the progression of her disease might look like.
After her transplant, she experienced post-intensive care syndrome, which included post-traumatic stress symptoms caused by four months in the intensive care unit. Flashbacks and ruminations on the events of her hospital stay kept her up at night for about six months after she got home. Her brain was trying to process all that happened while she was in survival mode, and unfortunately, most of this processing happened in the middle of the night.
Medication side effects
Many of the medications prescribed for pulmonary fibrosis and post-transplant care can cause sleep problems.
Prednisone, a corticosteroid used to treat inflammation, is a notorious sleep disruptor. This medication is commonly used after transplant to prevent organ rejection.
Esbriet (pirfenidone), one of two anti-fibrotic medications approved by the U.S. Food and Drug Administration for IPF, also can cause insomnia.
Diuretics may not cause insomnia directly, but having to wake up repeatedly to urinate sure does make it hard to sleep.
Lastly, Prograf (tacrolimus), an anti-rejection medication, can cause tremors. One of the people I chatted with said that the tremors in his arms kept him awake to the point that his medical team had to lower his dosage.
How can patients deal with all of these things and get better sleep? Luckily, along with common gripes, there were also bits of advice from the PF community members I spoke with.
Lifestyle adjustments, such as establishing a routine starting with as much exercise as you can tolerate early in the day and winding down with good sleep hygiene, is a start.
To help with pain, wedge pillows or an adjustable bed were all suggested to make sleeping at an angle more comfortable.
If oxygen is prescribed, using it at night can be a game changer. Whether you use a cannula or a CPAP machine for sleep apnea, adding supplemental oxygen can help your body get enough oxygen while you sleep.
To address the mental symptoms and anxiety of living with a progressive disease, therapy can help you process your experience and relieve stress. Your medical team should include a social worker who is a great point of contact for mental health treatment.
Last, but not least, medications and supplements might help when nothing else does. My mom takes gabapentin to help her sleep. She and others mentioned that they had tried melatonin — an over-the-counter supplement — with mixed results.
Always talk to your doctor and other members of your healthcare team before taking any medications or supplements or modifying your treatment plan.
What helps you sleep? Please share in the comments below.
Note: Pulmonary Fibrosis News is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Pulmonary Fibrosis News or its parent company, BioNews, and are intended to spark discussion about issues pertaining to pulmonary fibrosis.
I use cannabis edibles for help with sleep and so far sleep has not been a problem. The cannabis also helps combat the ongoing nausea and loss of appetite I experience from OFEV.
Thanks for the insightful article it couldn't have come at a better time. Last night I was on oxygen for the first time and feel my sleep quality improved immensely. I only woke up once and that was due to falling asleep with my hearing aids in. My big concern was the noise of the machine but that was not a problem.
I had already inclined the bed, taken melatonin on a daily basis and tried to eliminate blue-lights as much as possible but was unaware that Esbriet had insomnia as a side effect. I've been fighting that for years and quite often have been taking the final dose before bed, that will change.
Once again thanks for your insightful comments.
I fought against it for a while, but my pulmonologist recommended I sleep using my oxygen concentrator.
It worked! I now get good sleep most of the time. I use my smart watch to track my O2 all night, and I clearly have good saturation almost all of the time. I wish I hadn’t been so stubborn.
I take a magnesium tablet and another sleep aid called Rest and Relax which help me read myself to sleep. Of course, I need to get up in the middle of the night to use the bathroom, but usually can fall back to sleep. I sleep connected to my concentrator.