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Welcome to Patient Empowerment Pulse: Your Guide to Becoming Your Own Best Advocate

  Check out our storefront for self-advocacy tools and consultations. Or leave us a tip to show your support. Welcome to Patient Empowerment Pulse: Real-Life Wisdom from a Professional Patient Who I Am Welcome to Patient Empowerment Pulse, a blog built on the hard-won wisdom of someone who’s lived both sides of the healthcare divide. I’m Joanna, and this is more than just a health blog—it’s a survival guide for anyone trying to navigate chronic illness, complicated care teams, and a medical system that often feels like it’s working against you. I didn’t set out to become a professional patient. I trained for a career in culinary arts. But life had other plans. Over the years, I was diagnosed with lupus, Sjögren’s syndrome, spondylitic arthritis, inflammatory-onset diabetes, and a growing list of related conditions. That’s when I discovered that all my professional training didn’t fully prepare me for what it means to actually live this every day. This blog is where I share the str...

The Chronic Illness Patient’s Guide to Fatigue: Why We’re Always Tired (and What Actually Helps)


If you’ve ever felt like no amount of sleep could make a dent in your exhaustion, you’re not alone. Chronic illness fatigue isn’t just being "tired." It’s that deep, bone-weary exhaustion that sticks around no matter how much you rest. For many of us, it can be just as debilitating as pain, turning even the simplest tasks into uphill battles.

But why does it happen, and more importantly—what can we actually do about it? It’s more than just feeling tired—it’s a deep, bone-weary exhaustion that doesn’t go away with sleep. For many patients, this kind of fatigue is as debilitating as pain, making even the simplest tasks feel impossible. But why does it happen, and more importantly, what can we do about it?

Why Chronic Illness Causes Fatigue

Medical fatigue isn’t just about overdoing it or not getting enough rest—it’s a complicated mix of inflammation, nervous system glitches, and energy production issues that make everyday life feel like running a marathon with no finish line. Unlike regular tiredness, which usually improves with sleep, chronic illness fatigue often lingers no matter what. If you’ve ever wondered why, the Mayo Clinic has a great breakdown: Mayo Clinic on Chronic Fatigue. It stems from a mix of physiological, neurological, and biochemical imbalances that disrupt energy production and recovery.

  1. Inflammation – Many chronic illnesses, including autoimmune diseases, are driven by persistent inflammation. This inflammation triggers the release of cytokines, which can lead to profound fatigue as the body prioritizes immune activity over energy production.

  2. Mitochondrial Dysfunction – The body’s energy-producing centers (mitochondria) don’t function properly in many chronic illnesses, leading to a reduced ability to generate energy at the cellular level.

  3. Autonomic Dysregulation – Conditions like dysautonomia or POTS (Postural Orthostatic Tachycardia Syndrome) cause imbalances in the autonomic nervous system, leading to sudden energy crashes, dizziness, and an inability to tolerate exertion.

  4. Medication Side Effects – Many treatments for chronic illness, including biologics, steroids, and pain medications, can cause fatigue as a side effect. While these medications help manage symptoms, they also introduce new challenges in maintaining energy levels.

  5. Sleep Disruptions – Pain, inflammation, and neurological issues can all interfere with deep, restorative sleep. Even if a chronic illness patient gets eight hours of sleep, it’s often not high-quality sleep that allows for real recovery.

Most of us don’t fit neatly into just one of these categories. If you’re anything like me, different triggers might hit harder at different times—sometimes it’s inflammation, sometimes it’s medication side effects, sometimes it’s just a bad stretch where everything crashes at once. Paying attention to what’s draining your energy at any given time can help you tweak your approach and make things a little more manageable.

What Actually Helps?

There’s no magic cure for chronic illness fatigue, and let’s be real—if there were, we’d all be using it by now. But over time, I’ve found that small, intentional changes can add up in a big way. It’s about balancing rest and movement, finding little hacks that work for you, and not beating yourself up for needing more downtime than the average person. Here’s what’s actually helped:

1. Strategic Rest (Not Just More Sleep)

  • Planned rest periods throughout the day can help prevent energy crashes.
  • Listening to early fatigue cues and resting before exhaustion sets in is more effective than pushing through.
  • Lying flat for short periods can help with autonomic regulation, especially for those with POTS or dysautonomia. I call this my "horizontal time." It serves the same purpose as taking a nap when your body isn't ready for sleep—allowing your nervous system a chance to reset without the pressure of actually falling asleep.

2. Energy Conservation Techniques

  • The Spoon Theory approach – Prioritizing energy use and avoiding unnecessary exertion can help manage daily fatigue. Originally coined by Christine Miserandino, Spoon Theory is a widely recognized way to explain the limited energy reserves of those with chronic illness. You can read more about it here: Spoon Theory Explained.
  • Using assistive devices (shower chairs, mobility aids, or compression garments) can reduce the energy expenditure needed for basic activities. One simple but effective tool is a quality heating pad, which can provide warmth and muscle relaxation to help manage fatigue and pain. If you're looking for a reliable option, check out this highly-rated heating pad that we recommend for chronic illness patients.
  • Breaking tasks into smaller steps and incorporating rest breaks can make larger activities more manageable.

3. Optimizing Nutrition & Hydration

  • Electrolyte balance is crucial—many chronic illness patients experience dehydration or poor fluid regulation, so drinks like Liquid IV or electrolyte tablets can help. When choosing a hydration supplement, look for one that contains a well-balanced mix of sodium, potassium, and magnesium, as these electrolytes play key roles in maintaining proper fluid levels and muscle function. If you're unsure which one to try, Liquid IV and other medical-grade electrolyte powders are often recommended for those with chronic illness due to their optimal electrolyte ratios and rapid absorption.
  • Protein and healthy fats support long-lasting energy compared to carb-heavy meals that may cause crashes.
  • Anti-inflammatory diets (rich in omega-3s, turmeric, and whole foods) may help reduce inflammatory fatigue.

4. Medication Timing & Adjustments

  • Taking medications at optimal times (for example, taking steroids in the morning to mimic the body’s natural cortisol rhythm) can help mitigate fatigue.
  • Tracking medication side effects can help identify whether a certain treatment is making fatigue worse.
  • Discussing options with a doctor—sometimes a dose adjustment or switching to a different medication can improve energy levels.

5. Movement (Even When It Feels Impossible)

  • While overexertion can make fatigue worse, gentle movement (like stretching, walking, or mobility exercises) can improve circulation and prevent deconditioning.
  • Adaptive exercise programs (like seated yoga or water therapy) can be a good middle ground for people who can’t tolerate traditional workouts.
  • Consistency over intensity – A few minutes of movement each day is better than overdoing it once and crashing.

Final Thoughts

If you’ve ever been told to just "push through it"—I get it, and I also know that advice is useless when you’re dealing with real medical fatigue. This isn’t about mindset or motivation; it’s about understanding what’s happening in your body and learning how to work with it instead of constantly fighting against it. The goal isn’t to force more energy out of yourself—it’s to manage what you have in a way that actually makes life easier. With the right adjustments, you can regain some control over your energy levels and find a rhythm that works for you. It requires a thoughtful, science-backed approach that acknowledges the body’s real limitations while finding ways to work with those limitations rather than against them. The key is to strategically manage energy, support cellular function, and listen to your body’s signals. 

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