Fatigue is common after stroke, with 50 percent of survivors in one study saying tiredness was their main problem twelve months on.
The cause of fatigue after stroke remains unclear but one simple explanation is that cognitive, physical and sensory changes after stroke mean everything takes more effort. There’s also the theory the neuroplasticity involved in recovery is a physical process, which is actually fatiguing.
Fatigue can present as a feeling of weariness, tiredness or a lack of energy that is not improved by rest. It can be physical, mental or psychological. Symptoms of fatigue can include headache, dizziness, blurred vision, increased pain, aching muscles and reduced coordination and balance. Other symptoms include ‘brain fog’, impaired memory and decision-making, moodiness or irritability, anxiety and depression or low motivation.
Despite fatigue being so prevalent after stroke, it isn’t always discussed until it becomes problematic. Knowing about fatigue is essential to recognise its impact on daily life and to identify strategies to minimise the effects.
Maree was completely unprepared: “I didn’t know about post-stroke fatigue and so it was totally unexpected. It may have been mentioned in hospital and probably was in literature given to me at the time, however nothing and no-one seemed to emphasise the fact it can be such extreme tiredness.”
Heather’s experience of education around fatigue was different, but still difficult to navigate. “My occupational therapist made a big deal of it when I was returning to work. Which was both helpful in that people knew what to expect and harmful in that I wasn’t as badly affected by it as everyone expected me to be. So even when I was happy to push limits other people were reluctant to let me.”
For some stroke survivors fatigue improves over time, whilst for others it can be persistent and debilitating. “My fatigue still gets me down. It is still present, and has never really waned or improved dramatically. I have learned to live with it, but wish other normal people would understand how quickly I can tire” John said.
Some things that can help include:
Take care of yourself. Eat a healthy diet and drink adequate amounts of water. Get adequate sleep, go to bed at the same time each night and switch off electronic devices at least an hour before bed. And avoid drinking too much alcohol. Heather says “I’m four years post stroke now. I still need more sleep than other people and I don’t always wake up ‘awake’. Sitting down to watch telly or read a book on the weekend will usually result in an impromptu nap.”
Listen to your body and know your limits. Plan regular rest breaks and recognise any patterns of fatigue. Do tasks in a way that uses less energy, like sitting down to get dressed. Break larger tasks into several smaller tasks. Most importantly, prioritise the tasks that are most important to you. Heather’s advice is to “Plan and be aware. Remember everything takes energy and now you’ve got to conserve it. Get into a stable routine, but make space for naps as well. You can push through it but you’ll pay for it later. Be especially vigilant for things like clumsiness which can be indications you’ve pushed too far.”
Get some exercise. Move your body to stimulate good endorphins. Build up stamina and strength slowly and sensibly. John says it helps to “Establish a routine and try to stick to it. Remember to exercise, and don’t sit around all day, even if you feel like it.”
Ask for advice and support. Talk to your doctor, especially about your medications, as some can contribute to fatigue. Talk about it with supportive friends, family and other stroke survivors who have been through it.
Finally, take up some of those offers of help: you don’t have to do everything yourself. Heather’s learnt a lot about fatigue since her stroke. “I do have to watch out if it’s a stressful week at work, I find that can trigger a fatigue hit, also things like colds and sunburn that put pressure on the immune system can trigger it too. Also remember it accumulates unless dealt with. Don’t just ignore it.”
Maree’s best tip? “Accepting it, first of all. Fatigue certainly has a way of making you slow down, allowing your body to heal and ultimately that’s a good thing.”
If you need advice or have any questions about fatigue please call us on StrokeLine 1800 STROKE (1800 787 653).