Helping Others Understand: Post-Stroke Fatigue
[Helping Others Understand is an open-ended, intermittent series designed to support stroke survivors and family caregivers with helping friends and family better understand the nuances, complications and realistic expectations for common post-stroke conditions. If there is a specific post-stroke condition you’d like to see us address in future issues, we invite you to let us know: email@example.com.]
Stroke is unpredictable both in its arrival and in the consequences it leaves, but one common stroke deficit is fatigue. Some studies indicate that as many as 70 percent of survivors experience fatigue at some time following their stroke. Unlike exertional fatigue that we feel after working in the yard, post-stroke fatigue occurs from doing typical everyday tasks or sometimes from not doing anything. “It is a fatigue associated with the nervous system, which is quite difficult to understand,” said Jade Bender-Burnett, P.T., D.P.T., N.C.S., a neurological physical therapist in Falls Church, Virginia. “It’s very frustrating to the person who’s living with it because, unlike exertional fatigue, post-stroke fatigue doesn’t always resolve after you take a break, or get some rest.”
That has been Roman Nemec’s experience since surviving an ischemic stroke 11 years ago. It doesn’t seem to matter how much sleep he gets, “I walk around tired all the time, even after 9-10 hours of sleep,” he said from his home in Georgia.
This can be difficult for friends and family members to get their heads around because they have not likely experienced this kind of brain fatigue. Bender-Burnett has asked her clients who were marathoners prior to their stroke to compare the fatigue one feels following a marathon to post-stroke fatigue: “They said the fatigue you feel after damage to the brain is unlike any fatigue they’ve ever felt,” she said.
While there is no standardized scale for post-stroke fatigue, Bender-Burnett says that therapists distinguish between two types of fatigue. “Objective fatigue occurs when we can see physical, mental or cognitive changes,” she said. “With subjective fatigue we don’t see any changes, but the survivor will tell you that they’re feeling extremely weary and have no energy.”
For some this goes on for a few months after their stroke, for others, like Roman, it is persistent. Fatigue may be a side effect of medication. “Post-stroke fatigue is very individualized,” Bender-Burnett said. “One of the most frustrating parts of post-stroke fatigue is that it’s so unpredictable. Today, getting up, brushing your teeth and putting on your clothes may be fine, but tomorrow you may not be able to complete the morning routine without a rest break. That unpredictability is very frustrating for people and makes reintegration into daily life difficult.”
Post-stroke fatigue often changes over time. People report more and greater fatigue in the first six months. It’s episodic at first and seems to come out of nowhere: “They may be functioning well, and then all of a sudden they hit a wall,” she said. “It seems that as they get farther along in recovery, those hit-the-wall episodes decrease, and the lingering effect is ‘I just don’t have the energy to do all the things on my plate.’”
Life consequences span the spectrum from nuisance to career-ending. It can impact a survivor’s ability to function in unpredictable ways: As they tire, they may become clumsy or their speech may be affected. Their ability to understand, comprehend or recall may be compromised. Some people get irritable, while others experience increased emotional lability (crying or laughing with no apparent trigger). Bender-Burnett has worked with people who have made remarkable recoveries but were not able to return to work because of post-stroke fatigue.
Just as the consequences are individualized, so are the responses. If your energy is better in the morning, then take advantage of that. For mental fatigue, the most effective response is to sit quietly with low sensory stimulation, not necessarily take a nap. Some survivors may require regular and scheduled rest breaks or even a nap; that does not work for Roman: “I just live through it,” he said. “There are worse things than being tired. I feel good; I can get around; I can talk. Life is good compared to what it could be. Being tired all the time is not a big problem.”
Rhonda Hand, whose significant other, Tarvin, is a survivor, said: “In our household the fatigue issue is factored in before any event or activity and recuperation time after an event or activity. We just block off rest time like another activity; if we don’t, everything shuts down, including speech. Over the years, we have become much more proactive in scheduling appointments with anybody. There is nothing before 8 a.m. That’s when deep sleep is happening.”
Knowing your limits — and quitting before you hit them — is key to living with post-stroke fatigue. Survivors with fatigue have limited energy reserves, and if they get depleted, they take longer to replenish. “You don’t want push to the point just before you’re exhausted, you want to end on a high note, leaving some reserves,” Bender-Burnett said.
“We’re still learning about post-stroke fatigue from the healthcare perspective, and so I think it’s important that we all be willing to recognize it and have open communication about it,” Bender-Burnett said. “I urge family members and friends to come from a position of compassion and understanding rather than expectation that everything should be better, because, much like depression, others can’t always see it but, if you’re feeling it, it can be quite limiting.”
The Stroke Connection team knows that it can sometimes be hard for family and friends to understand how profoundly post-stroke fatigue may be impacting a survivor. We encourage you to share this article with the people in your life — and, for those pressed for time, we’ve created a quick-reference sheet that you can print or share via email or social media with family and friends.