Patient Blogs | Lupus
Tips for Managing Lupus Fatigue
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Is anyone else fatigued beyond words? What does that mean for those us living with chronic illnesses like lupus? After 12 years of a lupus then fibromyalgia diagnosis, I’m still learning and respecting how I perceive my own fatigue. The summer is in full swing, what a time to be fatigued, so let’s talk about it!

Research estimates fatigue is the most prevalent symptom of lupus, affecting 80% to 90% of patients -- and their quality of life. I’m quite familiar with this severe fatigue, it’s almost like my shadow. If you’re fortunate enough to fly the coop this summer, you may even experience a bit of jet lag. Living with lupus fatigue is similar to being stuck in jet lag, full-time that is. No matter how much I rest, hydrate, live holistically, etc., I often experience that constant inability to regulate myself to the time zone I’m in – which is usually my own bed!

I’ve found lupus fatigue to be overwhelming -- physically, psychologically, and emotionally. One moment all cylinders are firing; there’s a tenacity surging through me. Hours later, I might be slurring my words or slipping into a cat nap without notice. Yes, I have the superpower to nap at any given moment, but it doesn’t mean I sleep soundly and wake feeling refreshed. I dream of the nights I truly rested, sleeping 7 to 9 hours. It sounds unreal, but at times I’m so exhausted my sleep routine seems like a futile exercise of wistfulness, producing only 3 to 5 hours. I know, yikes! Try explaining to your co-workers or loved ones that you’re experiencing fatigue and unable to join the upcoming summer soiree. They might respond with what they consider “sage advice.” Here are my favorites:

  • We all get tired.
  • Nap; you’ll feel better.
  • Have you tried herbal remedies?
  • I wish I could sleep the day away, too.
  • YOLO, rest in the fall.

While good intentioned, it often discounts just how encompassing fatigue can be. Insert high five, I SEE YOU. Sometimes empathy wanes and so do those invitations. Trust me, I wish it was due to over-exertion, but fatigue has crept up on me after days of mindfulness. I’ve tried to sleep, organize, or medicate it away -- but it’s not that simple. It’s more than lack of rest; it’s a never-ending state of exhaustion in all areas of livelihood. Simple tasks like taking a shower, filling out an intake form, or even a conversation can feel like an Olympic activity. Many articles will speak about combating fatigue, as if you can Chun-Li (Street Fighter video game) your way out of it. If you’ve successfully done so, kindly bottle that elixir now! I’ve end up on the perpetual hamster wheel of chasing a fix to fatigue, leaving me feeling even more depleted.

There are so many contributing factors to fatigue. But for our consideration, disease activity from fibromyalgia or lupus (especially during flares), can be a culprit. Medication side effects and other conditions related to my condition like anemia, lupus nephritis, vasculitis, pericarditis, depression etc., may also be factors. However, it’s important to note, fatigue is not always related to lupus. That’s why it’s key to discuss any noted changes and get help early.   

My own symptoms related to lupus fatigue include brain fog, muscle aches and pain, loss of interest, irritability/moodiness, sleepiness, and also psycho-social factors like helplessness and anxiety. The emotional roller coaster of these symptoms have made it hard to work, visit the glory days of athletics, or even enjoy aspects of intimacy with my hubby. But I won’t give up on my body, and neither should you. I, too, have experienced FOMO (fear of missing out) due to fatigue, but I’m evolving. It has taken some crashing and burning, but I’m continuing to curate tools that help me manage fatigue from day to day. Here are a few to consider as you embrace the journey:

  1. Actually, accepting fatigue helps me to recognize it. I regularly address it with my own grace and measuring stick.
  2. Checking in with yourself. Journaling symptoms before and after each day/week to unpack triggers.
  3. Changing my idea of rest. There is power in saying, “I’m tired, I need rest.” Not resting to busy myself, but resting to be!
  4. Engaging in shared-decision making with a practitioner. They may be unaware of how debilitating things are. Discuss areas of concern, SOC, and potential goals.
  5. Making regular professional mental health check-ins.
  6. Addressing lifestyle changes that I can reasonably control – caffeine intake, moderate movement, mitigating negative energy, sun/heat exposure.
  7. Honoring all of me, I’m a whole entire person. Fatigue doesn’t completely define who I am, there’s much more around the corner. God made no mistakes here!

 

 

 

Photo Credit: Grace Cary / Moment via Getty Images

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Monique Gore-Massy

Monique Gore-Massy

Diagnosed in 2010

Monique Gore-Massy is a global and national lupus advocate with organizations like the Lupus Foundation of America and American College of Rheumatology. Her journey from patient to advocate comes from empathy, faith, and a curiosity to edify others. She collaborates with stakeholders on research and quality initiatives, lupus awareness, and improving outcomes while advising on equitably embedding patient centricity in care. She strives to stir up hope so all patients can be found “in the room where it happens.” She is Mr. Chip’s pawrent, Alvin’s wife, and a minister. Link with her here.

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