Sometimes the only time I don’t feel tired is when I am exhausted. I am sure many of you who have dealt with debilitating lupus fatigue can say you have felt the same way. Can I get an “AMEN!?!?” Too tired to shout? Well then, Just sit back, relax and read.
It is believed that 80% of lupus individuals will at one point or another deal with the tired-can’t-get-out-of-bed-can’t-move-out-of-spoons-feeling that seems to strike at the most inopportune times. And the sad part is, it is not something that a cup of joe or a 20 minute catnap will cure. It is something that seriously affects one’s relationships, job and overall quality of life.
So, how do you identify the difference between lupus fatigue and normal everyday tiredness? And is there any way to combat it? Are there things that you are possibly doing to make your pre-existing fatigue worse?
Lupus Fatigue: Cause and Symptoms
Like most things with lupus, the cause of lupus fatigue is still somewhat of a mystery. Although a mystery, some doctors believe that lupus fatigue can be related to the overactive nerve signals and imbalances that are associated with the disease fibromyalgia. Since one third of lupus individuals have fibromyalgia, it is no surprise that extreme fatigue comes with it. Severe pain, anemia, kidney dysfunction, thyroid issues, immune suppression and adrenal fatigue are other physical conditions that can cause lupus fatigue, as well. Additionally, neuropsychiatric lupus can cause severe mental fatigue with associated issues of cognitive dysfunction, anxiety, depression and even mood or personality changes.
Now, everyone feels tired from time to time, but everyday tiredness doesn’t knock you flat like lupus fatigue. Lupus survivor Jennifer Knounthavong explains, “With lupus fatigue, you feel powerless. You don’t know how hard it will hit you and how long it will last.”
Here are some common symptoms associated with lupus fatigue:
- Physical fatigue: Does your body feel like it weighs 5000 pounds and you are walking in quicksand? You are not alone!!!! The day-to-day physical fatigue of lupus can be incredibly difficult to navigate. Plus, it can be dangerous too! Physical fatigue can affect your hand eye coordination, your balance and your ability to drive or operate machinery. In order to stay safe, be aware of when you have hit a wall and need to stop and rest.
- Mental fatigue: In an article by Melanie Harrison, MD, she compares the relationship between SLE fatigue and cognitive dysfunction to the “chicken and egg.” She states, “It is the ongoing cycle of confusion caused by exhaustion, which is caused by confusion, which is caused by exhaustion, and so on.” Establishing an understanding of how mental fatigue impacts you can help you problem-solve the everyday hurdles it can bring. A 2003 study entitled “Dimensions of Fatigue in SLE: Relationship to Disease Activity, Behavioural and Psychosocial Factors” found that mental fatigue can cause higher levels of depression, greater pain severity, and a lower satisfaction with social support networks. It is important to reach out and ask for help when you suffering from these symptoms because mental fatigue can be just as isolating as physical fatigue.
What Helps: Treatment and Preventative Measures
Sometimes lupus fatigue can be caused by another underlying condition or because of a side effect of a medication. So let’s get this straight…you are sick and tired. You take medication to help. The medication, in turn, makes you sick and tired. Talk about a slippery slope! Getting to the root of the cause, and being in tune with your body can be incredibly helpful with treating it. Here are some things to think about when it comes to treatment and preventative measures:
- Keep a food journal: Believe it or not, certain foods can increase your fatigue if you are sensitive to them. Keeping a journal of how you feel after you eat certain items can be extremely beneficial. Note: Most lupus individuals are sensitive to nightshade vegetables like tomatoes, potatoes and eggplant. These foods may increase disease activity and can, in turn, cause fatigue. Eating well and drinking enough water are important in meeting your body’s nutritional needs and maintaining a healthy weight.
- Track your medications: If you take your meds at night and feel like you have been “zombie-fied” in the morning, it might be the side effects of something you took the night before. Many medications cause drowsiness. Talk to your doctor about all the pro’s and con’s of the medications you are taking and how to best deal with the side effects.
- Get regular exercise: Staying physically active or increasing your activity level may help relieve fatigue. Studies have shown that it is particularly helpful with improving the physical fatigue of lupus.
- Learn to say No: Does your schedule (or your family’s) keep you out the door all day and your social commitments keep you out all night? Try eliminating one thing from the week and replace it with a well needed time of being still and recharge your batteries.
- Track your ZZZZZZ’s: Are you up all night and wanting to sleep during the day? You are in good company. Most lupus sufferers do not feel refreshed by the little amount of sleep they get at night. Sadly, being unable to sleep less than the recommended 7-8 hours may contribute to feelings of exhaustion and will likely affect your mood and ability to function. It is important to track your zzzzzzzzz’s and talk to a sleep specialist or your primary care doctor about ways to help your sleep schedule.
Fatigue can be one of the least empathy earning and most challenging symptoms of lupus because you cannot “see” it – it is not visible like a butterfly rash or a swollen joint, so it can be confusing to your friends and family. The best advice is to be open and honest about your fatigue and how it is affecting your life. Seek medical advice and/or a counselor about working on ways to improve your fight with fatigue. Now close your eyes and rest up! Back to top
Sources: lupus.org/resources/15-questions-fatigue-and-lupus, webmd.com/lupus/d2n-coping-with-lupus-11/boost-energy-lupus, hss.edu/conditions_lupus-fatigue-cognitive-dysfunction, Da Costa, D., Bernatsky, S., Pineau, C., Lowenstyn, I., Ménard, H., Dritsa, M., Dobkin, P.L. & Clarke, A. E. (2003). Dimensions of Fatigue in SLE: Relationship to Disease Activity, Behavioural and Psychosocial Factors. Arthritis & Rheumatology, 48(9).
Author: Kelli Roseta
All images unless otherwise noted are property of and were created by Kaleidoscope Fighting Lupus. To use one of these images, please contact us at firstname.lastname@example.org for written permission; image credit and link-back must be given to Kaleidoscope Fighting Lupus.
All resources provided by us are for informational purposes only and should be used as a guide or for supplemental information, not to replace the advice of a medical professional. The personal views expressed here do not necessarily encompass the views of the organization, but the information has been vetted as a relevant resource. We encourage you to be your strongest advocate and always contact your healthcare practitioner with any specific questions or concerns.