Energy Management for People With Mitochondrial Disease
Everyone has an “energy baseline” or sweet spot where we have enough energy to do the things we want to do, but having mitochondrial disease means that the body has trouble making energy. Scientists don’t know the exact mechanism of how mitochondrial dysfunction leads to fatigue, a hallmark symptom of the disease. Patients also find that it takes longer to recover after physical activity.
Understand the connection between energy and mitochondria
The energy that we have is a balance of saving energy (getting rest), using energy (activities), and making energy (from food and hydration). Nearly all of our cells have mitochondria, which are known as the “energy factories” of the cells. They produce energy from the food we eat. For people with mitochondrial diseases, this “factory” is inefficient in that it takes more input than normal to create the same amount of energy. Or the factory can be “leaky,” meaning that it produces energy inefficiently.
Maintaining an energy balance may be difficult, but here are a few tips to help you manage your energy if you have mitochondrial disease.
Know your energy baseline
Every person’s “energy baseline” is different, depending on skin color, basic vital signs (such as heart rate, breathing rate, blood pressure, and body temperature), alertness, gastrointestinal function, and behavior.
Keeping track of your symptoms and noting in a journal or log when you feel most tired can help you notice patterns. This can help you organize your day better and complete tasks at different times of the day, for example.
Rearrange your home to make tasks easier
Think about ways to make daily tasks easier. If you always need a stool when you’re working in the kitchen, for example, keep the stool there so that you don’t have to move it every time you need it.
Use good body mechanics when standing and working, as good posture can help you feel less tired.
Consider moving your bed to the first floor so that you don’t have to climb stairs as frequently.
Eliminate extra effort
Look for ways to save energy. If you can perform a task while sitting, don’t stand. Putting a shower chair in the tub can make washing easier, for example.
Plan ways to sit while you’re getting dressed.
Instead of walking through the grocery store for all the things you need, think about using a pickup service so that your items are ready for you when you get to the store.
Break big tasks into smaller ones
Break up tasks into smaller ones and prioritize the most important. Plan time for rest. Taking a 10- or 20-minute rest can make a difference in your energy levels. Also, spread out big tasks throughout the week so that you’re not overwhelmed on any given day.
Last updated: March 30, 2020
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