Management Tools for AS Fatigue
For many of us with AS, fatigue is more troublesome than our pain. There are days we wake up and don’t feel rested. Other times we are doing just fine and then suddenly the wave of exhaustion hits without warning.
It has been reported that fatigue is present in up to 73.4% of people with AS, as compared to the non-AS population 30.5%.1 There are many potential causes for fatigue such as disease activity, pain, poor sleep, depression, and an lowered overall sense of well-being. Regardless of what the cause is, we all desperately want a solution. There are many ways to manage fatigue. Here I will focus on two tools that I have found helpful in my practice as a physical therapist: energy conservation, and activity pacing.
Many of us have heard of spoon theory. Spoon theory is based on the idea that we have a certain amount of energy available for the day, or a number of spoons, and once that energy runs out we can no longer perform activities we need or want to do. We have to choose what is most important and focus our spoons on those items.
For example, let's say you start out with 10 spoons for the day. Along with your normal daily activities you have a social gathering to attend. You know the social gathering will expend a lot of energy. In order to ensure you can participate and have an enjoyable time, you need to carefully plan how you will use your other spoons.
- Shower=2 spoons
- Get dressed=1 spoon
- Make breakfast=2 spoons
- Clean kitchen=3 spoons
- Social gathering=3 spoons
Eleven spoons used, but wait, that’s 1 more spoon than you started with! The only way to ensure there are enough spoons for the social gathering an activity needs to be eliminated or reduced. One potential solution is to only clean half of the kitchen that day and leave the remainder for the next. Although it can be frustrating to purposefully limit yourself from completing an activity, it is vital for those of us with fatigue to plan our day in advance. Some people may find it helpful to record their routine for the day in a journal similar to the example above.
Another helpful concept to use is activity pacing. An individual without AS, may be able to complete the above activities back-to-back without an issue. However, many of you reading this probably have tried to do this and then found yourself incapacitated for the remainder of the day, or maybe even for a few days following. To prevent overwork fatigue, taking breaks is vital, not only that but taking a break before your fatigue level increases.
It can be helpful to rate your fatigue on a 0-10 scale in the morning (0 being no fatigue, 10 being unable to leave your bed). With each activity reassess that level. If the fatigue has risen by more than 2-3 points, it may be time for a rest break. Rest breaks may look different for each person. Whereas one person may only need to sit for 10 minutes and have a beverage, another may need to physically lie down in order to feel refreshed.
In my experience, thinking of the day in terms of spoons and pacing can help in prioritizing what is most important and may prevent overworking.
Do you use the word disability to describe your AS?