Painsomnia: The Unspoken CF Symptom

Painsomnia became more of an issue for me in my twenties when I felt it was a symptom often overlooked by CF doctors. I explicitly remember telling a ward physician about my chest pain and how it seemed to increase at night. It was not the sharp stabbing pleurisy pain everyone jumps to when you mention CF and pain. This was a constant soreness which was more of a niggling, “breathing pain”. It feels like somebody scratching razors along the inside of your airways. The physician at the time told me it is impossible to feel pain within my airways, indicating it was a psychosomatic symptom rather than a real physical symptom.

I am relieved to say that medicine and the management of airway pain has come a long way since then. Nowadays I've heard it spoken about as a symptom of CF, by both patients and physicians.

When painsomnia strikes

Whenever I describe this discomfort to my CF team, I still feel like a fraud because it is not what I imagine the obvious description of chest pain to be like. It is more like a constant sensitivity, a nuisance, a little gremlin scratching at my airways. Every single breath feels like an itch that you can't reach yet it isn't an itch, it's sore and it’s raw. It feels like my lungs are oozing and the tissue beneath is red and swollen. Sometimes the pain can resemble a stiffness, a ripping or tearing of the tissue as if you've stretched your lungs a little too far.

The further the day goes on, the more exhausted and swollen my airways become and that's when the painsomnia kicks in. And we all know, pain often feels worse at night. That is exactly what painsomnia stands for - pain that causes issues with sleep.

My painsomnia triggers

• Infections that are flaring
• A bad night sleep
• Overexercise
• Allergy triggers
• Periods
• Chest physiotherapy
• Swimming
• Missing treatments
• Muscle soreness and tightness
• Bad posture
• Stress
• Viruses

What helps ease nighttime pain

My chest raging with inflammation as I get into bed is when I struggle the most to manage my pain symptoms. Things I use to help my night time pain are:

• Painkillers
• Hot baths with essential oils
• Loose clothing
• Vapour menthol rubs or ibuprofen gels to rub over my back and chest
• Heated wheat bag or hot water bottle across my chest - this along with painkillers is my favourite antidote of choice
• Mindful body scan meditation to help cope with thoughts around pain
• Listening to music/reading or doing something of choice to help distract away fro the pain
• Cuddles with a loved one or pet

Painsomnia and exercise

Physio can be a huge pain trigger for me so I always work within my limits. I complete my physio much earlier in the day to avoid it triggering my pain at night or try to break my physio sessions into smaller sessions throughout the day so that my airways don’t become overworked which leads to more soreness and irritation.

Avoiding heavy exercise in the evenings unless it is gentle stretches to soothe my body and mind as I have found exercise can also trigger my nighttime pain flares. I think the best way I have managed my pain is working out my triggers and the best ways to combat them so that when the sun goes down, I have the best chance at a pain free sleep.

Have you or a loved one dealt with painsomnia? Share with other CFers in the comments below.