I'm Not Just Tired: Chronic Fatigue in CF
In my husband’s very affectionately true words, “When are you not tired?”
According to many people living with cystic fibrosis: never.
In a study conducted in 2012, participants with cystic fibrosis reported fatigue in 73% of days during disease stability and 98% of the days during exacerbation.1 Wow! Personally, I was blown away when I read this statistic from the study. I knew fatigue was an issue in the CF community but I guess I thought my chronic fatigue was an extreme case outside the normal scope. Upon reading more about this subject, I feel more seen and validated at the state of my fatigue living with CF.
What is chronic fatigue?
Fatigue is often hard to describe to someone who hasn’t fully experienced it. A lot of people may assume being tired and being fatigued are the same thing. When in fact chronic fatigue is much more than just being “tired”. We all feel tired every now and then. However, tiredness gets better after a nap or good night’s sleep as you often wake up feeling refreshed. In that way, tiredness is often acute or short-term.
In comparison, chronic fatigue is long term to the point that no amount of resting or sleep makes it completely go away. It can be described as a lack of energy, heaviness, or weakness.1 Often, chronic fatigue is so intense it can get in the way of activities of daily living such as working, bathing, cooking, etc.
CF perceptions of fatigue
Just as CF is different, fatigue is felt differently throughout the CF population. The best way I can describe my own experience with fatigue is that it feels like exhaustion that soaks deep into my bones. My fatigue is heavy, draining, and relentless. At its worst, it’s a desperate and obsessive plea to make it through my day to get back into bed where my body can rest. Worsening quality of life, the reality of living with chronic fatigue is it can be debilitating--both physically and mentally.2
Other members of the CF community describe chronic fatigue in the following ways:
- It’s like I’m treading water with 25lb weights tied to my legs. -Ashley B.
- My lungs feel heavy. I have to debate whether to do something because it will wear me out. -Rachel R.
- It’s like a dark cloud is hanging over me all day and I can’t seem to get away from it. -Jordan R.
- Fatigue can feel like sadness in a way. -Erin M.
- Fatigue feels like a fog. It’s falling asleep the minute you hit the pillow from exhaustion. -Gillian M.
What causes chronic fatigue in CF?
The causes of chronic fatigue in CF are largely unknown but believed to be caused by a possible combination of factors:2
It is difficult for physicians and researchers to pinpoint exactly what causes fatigue in the CF population because CF itself can be so different from person to person. In addition, fatigue is unique to every person as well. For example, fatigue might be taking a midday nap in one person and being too tired to bathe themselves in another.
Tips and tricks for coping with fatigue
Coping with chronic fatigue can be really difficult in our busy, everyday lives. What works for some, may not work for everyone. However, here are some tips that have helped me cope with varying levels of fatigue.
Prioritize to-do list
Make a list of the items that need to get done today and focus on accomplishing them first. That way you won’t run out of energy before feeling somewhat productive for the day.
Enlist help from friends and family or hire services to take over some of your responsibilities such as cooking, cleaning, child care, or pet care. My family is great at providing meals when my fatigue is especially bad.
Don’t forget to exercise
I know it seems counterintuitive to expend more energy when you are already lacking in that department, but light exercise is beneficial for fatigue and well-being. Take a walk, practice calming yoga, or go swimming to stay active when fatigue hits hard.
Treat draining symptoms
Talk to your doctor about treating draining symptoms such as chronic pain, poor sleep, anxiety and depression, etc. that can lead to fatigue. Sometimes just talking about and creating a plan to feel better jumpstarts the healing process! Once my chronic pain was treated, my fatigue also got better.
Do you live with CF and chronic fatigue? How has it affected your life? Share your experiences below?
Have you (or a loved one) been experiencing any negative side effects from Trikafta?