When Sleep Isn't Enough: CF Fatigue and Prescription Stimulants

There are seasons of CF life that are just downright tiring. Correction: beyond tiring. It's that feeling that no matter what you do, you will never feel fully rested with CF. Relentless fatigue is something every person with CF has experienced at least once in their CF journey. Exactly, what is the difference between being sleepy and fatigued, and how can prescription stimulants serve as one option of treatment?

Chronic fatigue vs. being tired

If you have never experienced chronic fatigue, you might be tempted to think it’s the same as simply “being tired.” In reality, when someone is tired, they take a nap or get some extra sleep, wake up feeling refreshed, and can carry on with their day. Fatigue is different in many ways. Firstly, no amount of sleep or rest completely takes it away. Secondly, fatigue limits one’s ability to complete daily tasks or simply get out of bed. Thirdly, fatigue is often a sign or symptom of an underlying medical condition.

Meeting with a sleep doctor

Up until this point in my CF journey, I had never met with a sleep doctor. She listened to my complaints and trouble sleeping due to coughing, staying asleep from pain, and waking up feeling as if I didn’t get restful sleep. In fact, as I explained that it felt like I had lived another day in my sleep, she understood what I was trying to convey and expressed empathy. She suggested we do a formal sleep study, where you check into a hotel, and everything from your brain waves and leg movements to your heart rate and oxygen levels is closely monitored and evaluated.

Sleep study

The sleep study was as uncomfortable as it sounds, but survivable for one night. During a sleep study, surprisingly, my oxygen levels stayed within the normal range throughout the night; I had frequent awakenings likely due to coughing, which interrupted sleep. The frequent disruptions could explain the lack of restorative sleep I was experiencing.

Starting prescription stimulants

In the meantime, my sleep doctor decided it would be helpful to take a microdose of a stimulant to combat the fatigue I was experiencing. Stimulants are medications that increase alertness or wakefulness in various ways. The medication I was prescribed is used to treat narcolepsy, Shift Work Sleep Disorder, and Sleep Apnea. To quote the sleep doctor, “This is the same dose I give to my grannies who fall asleep on the couch.”

I said, “Why not? And gave it a try.

Although I generally welcome prescription medications, I am a bit more cautious about taking medications that you can become addicted to. I decided with my doctor's guidance that I wasn’t going to take the stimulant every day. Instead, I would save it for certain situations: days of extreme fatigue that left me bed-bound, social events at night when I had no energy to attend, or workdays when I felt excessively fatigued. The stimulant did exactly that: gave me enough energy to push through when I needed or wanted to, so I wouldn't miss out.

How have you combated fatigue with CF? Do you feel fatigue is misunderstood? Share with us below!