What Is Lupus Fatigue?
For most people, fatigue is an unwanted visitor that arrives at the end of a busy day.
Its invasion begins when you start to feel whole body tiredness and have difficulty completing physical and mental tasks. Typical cases of fatigue typically resolve after an adequate rest period.
People with lupus, however, tend to have abnormal episodes of fatigue.
Their unwanted visitor has turned into a permanent companion who might show up after the slightest exertion and refuse to leave even after they’ve managed a good night’s sleep – or two.
For them, the frequency, severity, and recovery time looks entirely different compared to those with regular fatigue.
What Does Lupus Fatigue Feel Like?
There are many different ways that lupus fatigue can manifest and, as lupus is notoriously variable, it rarely looks the same in two people.
So please keep in mind that these explanations, which are based on my experiences and those of lupus warriors I know, may not be all-encompassing for every person with lupus.
What Does Physical Lupus Fatigue Look Like?
Mild physical fatigue is often a literal drag as if extra pounds are weighing you down or something creating air resistance as you go about your day.
It doesn’t necessarily stop you from accomplishing things, but it will slow you down and make things harder than they need to be. This level of fatigue typically responds well to an afternoon nap.
As fatigue escalates, it starts to feel like it’s taking over your life. With moderate fatigue, you may only be able to manage a four-hour workday or find yourself carefully scheduling rest periods throughout the day. It’s likely you’ll have to start cutting nonessential activities out of your life to cope.
At its most severe, fatigue can be extremely debilitating. For me, intense physical fatigue creates a bone-deep weariness. I start to experience body aches and feel like I’ve pulled several all-nighters even if I’ve slept well and spent most of my day resting.
I often feel like my battery is completely drained. Not only is it empty, but there doesn’t seem to be any way to refill it. Sometimes it seems to go into the negative, as if I’ve borrowed energy and stamina from the week ahead – which I won’t be able to repay, of course.
Physical fatigue can be so exhausting that movement starts to feel impossible. This makes it hard to stay motivated, and at this point, others may misinterpret fatigue as laziness.
It’s important to communicate with those around you so that they can understand the difference, even though the way you feel can be hard to describe in words.
How Does Lupus Fatigue Affect You Mentally?
Mild mental fatigue makes you seem a bit absent-minded. You might be struggling to find words or remember things, and you’ll probably find yourself at the receiving end of jokes about getting older.
Mental fatigue, which is also referred to as ‘brain fog,’ can make it hard to concentrate or even stay awake. You may experience deep confusion and sluggishness that can make you appear intoxicated.
It can feel like forgetfulness on steroids. You might not be able to make decisions or have coherent conversations. The experience can’t be summed up with simple statements such as “I’m tired” or “I can’t think straight” because the fatigue can go much further and deeper than many people can articulate.
Understanding Lupus Fatigue Symptoms
It’s important to recognize the symptoms of fatigue so that you can pursue the best course of treatment. Some physical and mental signs of fatigue include:
- Lack of energy; feeling tired or continuously exhausted.
- Not being able to start or finish tasks.
- Vision issues.
- Drowsiness or possibly loss of consciousness.
- Dizziness or vertigo.
- Muscle weakness and/or pain.
- Lack of appetite or weight loss.
- Cognitive dysfunction, such as memory impairment, reduced decision-making ability, or trouble concentrating.
- Feelings of sadness, anxiety, anger, depression, or irritability.
Be sure to bring up any signs of fatigue with your doctor.
How to Explain Lupus Fatigue to Others
So how do you explain lupus fatigue to people who don’t know what it’s like?
One way to start is by clarifying that your fatigue is linked to your disease and not necessarily related to your activity levels. In fact, the amount of fatigue that people with lupus experience tend to be disproportionate from or unrelated to how active they have been.
Communicate that you tend to experience fatigue more frequently – perhaps even constantly – because of lupus and that recovering can be a lengthy process. Share personal details such as how often you have fatigue, its intensity, and how long it takes you to recuperate.
Since lupus fatigue can be physical, mental, or a combination of the two, you can help others to understand by sharing your specific symptoms with them.
Share that physical fatigue can make tasks of any size feel challenging and give examples of what that looks like in your daily life. With mental fatigue, you may want to prepare a description of your symptoms in advance since you could find yourself trying to explain it while you are experiencing it.
People will be curious about why you’re experiencing fatigue on a regular basis. While there are many potential causes of lupus fatigue, it’s not always possible to pinpoint which ones are responsible for each circumstance.
For example, it’s not fully understood why those with mild lupus or in lupus remission still have high levels of fatigue at times.
Not being able to provide an apparent reason for your fatigue sometimes makes it particularly difficult for people to understand what you are going through. However, it does give you an opportunity to explain how the unknown and the unsolved play a large part in lupus as a whole.