Tips for Managing Lupus Fatigue

By James Smith
Updated 2024-03-24 16:21:09 | Published 2022-07-13 22:34:06
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    • Our Lupus section on the iMedix Blog provides comprehensive insights into living with and managing lupus. Find articles discussing symptoms, treatments, and lifestyle tips, aimed at assisting patients, their families, and medical professionals in understanding and handling this autoimmune disease effectively.

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Is anyone else feeling an immense amount of fatigue? How does this impact individuals living with chronic illnesses like lupus? Having been diagnosed with lupus and fibromyalgia for 12 years, I am continuously learning about and respecting my own experience with fatigue. As summer is here, it feels like the perfect time to discuss this topic.

Research suggests that fatigue is the most common symptom of lupus, affecting around 80% to 90% of patients and greatly impacting their quality of life. This severe fatigue has become like a constant shadow in my life. If you are lucky enough to go on vacation this summer, you may even experience a form of jet lag. Living with lupus fatigue is similar to being stuck in perpetual jet lag. No matter how much I rest, take care of myself holistically, and stay hydrated, I often struggle with regulating my energy levels, even when I'm in my own bed.

Lupus fatigue is overwhelming, both physically and emotionally. There are moments when I feel energized and motivated, but a few hours later, I may find myself slurring my words or unexpectedly falling asleep. While I have the ability to nap at any given moment, it doesn't necessarily mean that I wake up feeling refreshed. I often dream of having a night of truly restful sleep, with 7 to 9 hours of uninterrupted rest. Unfortunately, there are times when I am so exhausted that my sleep routine feels futile, resulting in only 3 to 5 hours of sleep. It can be challenging to explain this fatigue to coworkers or loved ones, especially when they respond with comments that seem dismissive. Some typical responses include everyone gets tired, just take a nap, or offering herbal remedies. While these comments are well-intentioned, they fail to recognize the extent of fatigue that those with chronic illnesses experience. This often leads to a decrease in invitations and a lack of empathy. Trust me, I wish my fatigue was due to over-exertion, but it often arises despite practicing mindfulness. I have tried various methods to combat fatigue, such as sleep, organization, or medication, but it's not as simple as finding a quick fix. It is more than just a lack of rest; it is a perpetual state of exhaustion that affects all aspects of my life. Simple tasks like taking a shower, filling out forms, or engaging in conversation can feel incredibly draining. Many articles discuss strategies to combat fatigue, as if it is something that can be conquered or defeated. If anyone has found a way to successfully do this, please share your secret! As for me, I often find myself caught in a never-ending cycle of seeking a solution to my exhaustion, which ultimately leaves me feeling even more depleted.

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Fatigue can have many factors contributing to it. In the case of lupus and fibromyalgia, disease activity, especially during flares, can be a major cause. Medication side effects and other conditions related to my illness, such as anemia, lupus nephritis, vasculitis, pericarditis, and depression, may also play a role. However, it is important to note that fatigue is not always directly related to lupus. That is why it is crucial to communicate and seek help early if you notice any changes. Personally, my symptoms of lupus fatigue include brain fog, muscle aches and pain, loss of interest, irritability, sleepiness, and psycho-social factors such as helplessness and anxiety. The emotional roller coaster that comes with these symptoms has made it difficult to work, participate in athletic activities, or even enjoy intimacy with my partner. However, I refuse to give up on my body, and I encourage others to do the same. I have experienced FOMO due to fatigue, but I am learning and evolving. It has taken some trial and error, but I am continuously finding tools and strategies to help me manage my fatigue on a day-to-day basis.

Here are a few that you may consider as you navigate your own journey:

  1. Accepting fatigue and recognizing it as a part of your experience. Treating yourself with grace and understanding when dealing with fatigue.
  2. Checking in with yourself regularly. Journaling your symptoms before and after each day or week to identify triggers.
  3. Changing your perspective on rest. Embracing the power of saying, I'm tired, I need rest. Resting not just to keep busy, but to truly take care of yourself.
  4. Engaging in shared decision-making with your healthcare practitioner. Make sure they are aware of the extent of your fatigue and discuss your concerns, treatment options, and goals.
  5. Regularly seeking professional mental health support.
  6. Making lifestyle changes that you can reasonably control, such as managing caffeine intake, incorporating moderate movement, minimizing exposure to negative energy, and being mindful of sun and heat exposure.
  7. Honoring all aspects of yourself. Remember that fatigue does not define who you are, and there are always more opportunities around the corner. Have faith in yourself and your journey.
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