One of the most difficult symptoms of lupus, for me, is exhaustion. Exhaustion is not part of my natural vocabulary. I am a high-energy person, with a million things on my mind, and a million things I need to accomplish in a day. I know I am having a flare, or experiencing lupus symptoms, when the message running through my brain, all day and all night, in a “ticker” non-stop pattern is, “I’m exhausted… I feel so tired… I am so tired… “
Extreme fatigue (tiredness) is one symptom nearly 80% of lupus patients experience. In some, fatigue is their main symptom, and can become so debilitating it causes them to cease work and life activities. 1 It is not completely clear why fatigue plays such a large role in lupus patients’ disease, but there are many factors that seem to contribute to fatigue, including disease activity, pain, age, medications and more.
So What’s the Difference? Isn’t Everyone Tired?
One of the main things I hear from all types of people in nearly all aspects of my life is how tired they are. Everyone is busy, therefore, everyone is tired. It is true, everyone can get tired. However, the extreme fatigue in lupus is so much more than that. Here is what I mean…
I was 19 years old, at Ithaca College; a college freshman. My dorm was on the outside of the campus but was located as close as it could be to the main communication building, where most of my classes were at the time.
At this point, I was undiagnosed and had no idea I had lupus. The only thing I had recognized as being different was this weird, hot-to-the-touch, rash I would develop on my swollen knees, after long periods of standing or walking. (This was one of my first symptoms of lupus).
Every single day, and every single trip, out of my dorm room was a task. Every morning, getting out of bed was a task. I was so exhausted (there’s that word again); the shear thought of moving myself out of the bed, and then making a walk to my classes was overwhelming. I had to remind myself, it wasn’t that far, I could make it (there). I had to repeat this in a ticker pattern inside my head, every day, over and over. There were days I really thought I would not be able to make it back to my dorm room without sitting down to rest (and some days I didn’t). I constantly thought, “You are almost there, it’s just a few more feet. You can make it. Keep walking; you are going to make it. It’s not much farther.”
Still, isn’t that just being tired?
No, it is not just being tired. How do I know? Because when I take my lupus medications to treat my symptoms, those thoughts creep into my mind less and less. When my medications are working very well for me, and I am not having active disease, and not flaring, those thoughts NEVER cross my mind.
Another way it is different is that no matter how many naps I were to take, or how long I stayed in bed in the morning, the thought of getting out of bed never got any better. I could sleep the entire day away and STILL be exhausted.
When my disease level is low, or inactive, or my medications are working well, I want to get up in the morning. I wake up refreshed, and I want to hit the ground running. I want to accomplish the million things on my mind, and I can do it. I do it without thinking… “I’m exhausted.”
We all need ways to feel more rested, and to try to decrease those feelings of fatigue. What can we do?
• Alternate activities with rest periods throughout the day.
• Get a good night’s sleep, consistently.
• Split up large tasks into smaller ones, spread over time.
• Don’t take on tasks that are too big and will overwhelm you – learn when to say no.
• Eat healthy, and don’t smoke or over drink alcohol.
• Exercise (low-impact)
People with lupus should be getting at least 7 hours of sleep a night, and if you are in a flare, you may need even more sleep than that. Remember, your immune system is overactive. It’s very busy. Although it is busy doing things you don’t want it to, it doesn’t change the fact that it’s working overtime – therefore – your body is working overtime. Of course you are going to be very tired. For a person without lupus, a good example to explain this concept is to have them think about how they feel when they are sick. When their immune system is battling an illness, they go to bed early, sleep in longer, and take extra naps during the day. Why? So their body can continue to function and cope with the illness and strain on the immune system. This is what you do during active disease and flares. Unfortunately, it just seems to happen for most of us with lupus, more frequently than the general population.
Another post topic (for another day), but that ties into this post, is proper exercise. It is important, for lupus patients, to exercise to help control fatigue and joint inflammation. Exercise should be low impact, to prevent more strain on already-inflamed joints. Although we feel exhausted, low impact exercise will actually help us feel like we have more energy. It’s just a matter of getting our energy up enough to make it happen.
Most of us experiencing lupus symptoms are taking medication(s). We should try all of the suggestions above, as well as our medications. NSAIDS, are one of the most commonly prescribed medications for dealing with lupus symptoms. There has been some evidence to show these do help some with fatigue.2 Corticosteroids, another common treatment, are also shown to help with extreme fatigue, especially oral steroids, such as prednisone. Of course, there are side effects to taking these medications. You should consult your physician about what medications might be right for you.
As the next few days will be, no doubt, overwhelming and very busy, take some time to relax, and get rid of that ticker tape of exhaustion running through your head.
1- The Lupus Foundation of America. http://www.lupus.org/webmodules/webarticlesnet/templates/new_learnliving.aspx?articleid=2253&zoneid=527
2- The Lupus Handbook for Women by Robin Dibner & Carol Colman. http://www.amazon.com/Lupus-Handbook-Women-Date-Understanding/dp/0671790315