What Does Autoimmune Fatigue Feel Like?
Daniela Spear, LMBT, CSCS
At some point, we all get tired. But if you have an autoimmune disease you know there’s tired…and then there’s whatever this is *gestures broadly*.
Maybe you don’t have an autoimmune disease but you know that the tired you’re feeling isn’t a normal kind of tired. That’s why you’re here. Because you know that something just isn’t quite right. And you’re wondering if maybe, just maybe it could be autoimmune related?
I’m not a medical provider and although I can’t replace professional medical advice, I can share my experience with autoimmune fatigue. And I can tell you…autoimmune fatigue is nothing like being "just tired."
You wake up and, before you even open your eyes, you can feel it. There’s a heaviness in your bones that makes getting out of bed feel like your insides are made of concrete. Your feet ache the moment they touch the floor, your brain feels thick and swollen, and no amount of coffee or tea seems to clear the fog. You’re thirsty no matter how much water you drink. Basic tasks like taking a shower, doing the dishes, or even just getting dressed feel like a full-body effort event. You brace yourself every time you’re going to get up because you know how much effort it’s going to take. And the scariest part? Even the things you normally love to do, start to feel like a chore. Life itself starts to feel like too much.
You want to believe you’re “just tired,” and that getting some rest will help. But a part of you knows it’s deeper than that. This is the kind of tired that you feel deep in your soul.
If this sounds familiar, you’re not alone. You’re most definitely not imagining it. And I’m glad you’re here.
What Is Autoimmune Fatigue (and Why It’s Different)?
Autoimmune fatigue is not the same as being tired after a long day. It’s a whole body exhaustion. And it affects your physical body, your nervous system, your mind, and your emotional well-being.
Normal fatigue can be easily linked to a specific event or set of behaviors, like multiple late nights, and can be resolved with adequate rest. Your body gets back to normal after a good night’s rest.
Autoimmune fatigue however is persistent. Even if you’re doing all the right things like getting enough sleep, you’re hydrating, eating well balanced meals, gentle movement, and being mindful of your energy exertion during the day you still feel like your body is a ton of bricks you're dragging around through the day.
This type of fatigue is driven by chronic inflammation, due to a hyperactive immune system, and a nervous system that has been stressed for too long. This isn’t the same stress that you feel when you have a deadline to meet or when you’re running late to an event. This is a deeper, low-grade chronic stress that lingers behind the scenes, and it’s on all the time.
It’s the undetectable stress that drives you to say yes when you want to say no because you’re afraid of disappointing someone. It’s the stress that makes you settle because you don’t want to be an inconvenience to anyone. It’s the stress that keeps you quiet because you learned that it’s better to be seen rather than heard. It’s the stress that tells you daily that nothing you do is good enough and you need to take on more responsibility and do more for others.
That stress? Yeah, that’s the stress that sucks your energy so slowly and so quietly that you go decades without noticing it. You just think it’s your personality. But after years and decades of living with this low-grade chronic stress, your body’s resources get depleted and your soul is left feeling drained on every level.
Does this resonate? Yeah, same.
How Autoimmune Fatigue Affects the Body & Mind
At this point, you might be thinking, “But isn’t autoimmune disease just physical?” While the physical presentation of autoimmune disease - the chronic fatigue, the inflammation, the painful joints, skin rashes, etc. - is a major part of autoimmune disease, it isn’t the only part. The mind and body are very intricately connected. This is called the psychosomatic connection, or in less fancy terms, the mind-body connection. Everything that your mind experiences, your body experiences, and vice versa. Meaning autoimmune fatigue isn’t just caused by over-exerting our physical body, it’s also caused by over-exerting our mind and emotions.
If you’d like to learn more about how the psychosomatic connection plays a role in unraveling autoimmune disease check out my e-Book, UNLOCKING YOUR BODY'S SECRETS: A Guide to Understanding your Emotions and Healing Chronic Symptoms.
Understanding the psychosomatic connection of autoimmune disease requires us to consider how our day-to-day actions and decisions are actually driven by our internal beliefs systems. And how maybe those systems are no longer beneficial to our well-being. But that is a blog for another day.
For now, let’s take a look at how autoimmune fatigue affects both the body and mind - so you know that what you’re feeling isn’t something you need to power through alone.
One of the most common symptoms of autoimmune fatigue is waking up already feeling exhausted. Almost as if you didn’t sleep at all. Instead of feeling refreshed, your body feels heavy, stiff, and swollen - like gravity is pulling on you more than you should. Not only is it a struggle to physically get out of bed, even just thinking about the day feels like existential dread.
This is a soul-deep kind of tired. The kind that a nap won’t budge. (And for those of you that are not normally nappers, you are probably finding you need multiple moments of rest during the day. This isn’t you being lazy. This is your body trying to find opportunities to recover and regulate.) Autoimmune fatigue doesn’t just go away with a few nights of good sleep. This is the kind of tiredness that is persistence and leaves you feeling disconnected from your day-to-day life, your community, and most importantly, yourself.
Autoimmune fatigue also comes with brain fog that feels as though your brain is swollen. It’s a different feeling than the brain fog that comes from staying up late the night before or even going on a wild binger. This brain fog has a distinct feeling of heat and sandpapery friction, almost like your brain is rubbing against the inside of your skull. I know, that’s a bit graphic but this is what makes the autoimmune brain fog different from other causes of brian fog. The heat and sandpapery friction? Yeah, that's the inflammation you’re feeling.
On top of feeling physically drained, you also feel mentally and emotionally overwhelmed. How can you not when you’re trying to navigate around your days feeling like a ton of bricks?! It weighs on you literally and figuratively. You feel more irritable than usual, anxious, and just flat. The things that usually bring you joy and excitement feel like chores just waiting to drain your soul even more. You notice you have become very cynical to the people and things around you. The things that wouldn’t normally bother you feel like a bigger deal than they are. This isn’t you becoming a negative person, this is a physiological response to the chronic stress and inflammation in your body - the evidence that the mind and body are truly connected.
Other more physical symptoms tied to autoimmune fatigue are frequent fevers, without actually being sick with the cold or flu, and uncomfortable digestive issues such as bloating, loss of appetite, and sensitivity to foods you normally enjoy.
Acute Flare Up vs. Low-grade Flare Up
If you’ve read this far, there’s a good chance you’re thinking, “Yes, that’s exactly what I’m experiencing.” And here’s the good news: there are ways to support your body and move through autoimmune fatigue.
Before we talk about how, it’s important to first understand where your body is right now.
If you’ve never been diagnosed with an autoimmune disease and you’re beginning to wonder whether something autoimmune-related may be happening, I strongly encourage you to seek professional medical support. Autoimmune conditions exist on a spectrum, and understanding where you fall on that spectrum matters.
In my work, I often describe two different types of flares: acute flare and low-grade flares.
Acute flares occur when the body is overwhelmed by chronic inflammation and immune activation. These flares require medical evaluation and support. Autoimmune disease can become life-threatening if left unaddressed. Acute flares often occur at the onset of autoimmune disease, but they can also reappear after a period of remission.
Low-grade flares tend to happen in individuals who already have an autoimmune diagnosis, are under the care of a medical provider, and are generally stable or in remission. These flares are often triggered by accumulated stress - emotional, physical, or environmental - and reflect a body that is temporarily overburdened rather than in crisis. While they may feel intense, they typically do not require major medical intervention.
So here’s the distinction:
An acute flare up of autoimmune fatigue?
Please prioritize seeing a medical provider.A low grade flare up of autoimmune fatigue?
This is where holistic nervous system support can be incredibly powerful.
Note: If you’re experiencing an acute flare-up and are waiting for a medical appointment, the strategies below can still offer gentle support in the meantime.
Holistic Ways to Support Autoimmune Fatigue
When your body is in a low-grade flare, the goal isn’t to push through or “fix” yourself. The goal is to reduce the overwhelm of your immune system by setting up a support system for your body. Your body heals in a state of safety, not survival. Lymphatic Drainage Massage is one of the most effective ways to signal safety to your body; it calms the nervous system while flushing stagnant fluids to reduce inflammation. It’s an easy two-in-one approach that tackles inflammation while restoring your energy reserves. It provides your body with an external support to ‘let go’ without it having to try so hard.
Lymphatic Drainage Massage helps to:
Calm an overactive nervous system, giving your body a moment of relief
Stimulate lymphatic drainage and reduce stagnant inflammation
Improve circulation and oxygen delivery, giving your body back its energy
Ease muscle and connective tissue tension that drains energy
Support deeper, more restorative rest so you actually feel rested
At Remade Wellness in Durham, NC, I offer Lymphatic Drainage Massage in both 80 min and 50 min sessions to fit your time and budget. These sessions are best set up in a consistent schedule during a low-grade flare-up of autoimmune fatigue, typically once a week or once every other week for 3-5 sessions. And then monthly thereafter for regular maintenance.
If you came across this article and are thinking, “Shoot, I do not live in Durham, NC,” I also offer virtual Restorative Movement Sessions that are also a great option to support your body’s healing systems through a gentle movement based practice. These sessions are held virtually so you can learn to support your body from the comfort of your own home.
Curious to see how Restorative Movement Sessions can support you? Schedule a virtual consultation or check out some pre-recorded sessions on my YouTube Channel.
Where to find autoimmune fatigue support in Durham, NC
If you’re experiencing autoimmune fatigue and recognize yourself in this article, know that you don’t have to navigate it alone. There is support for you. At Remade Wellness, located in East Durham, NC, sessions are designed specifically to support women dealing with chronic fatigue, inflammation, and nervous system overwhelm that shows up as autoimmune disease. If that’s you, you belong here.
Ready to take the next step? I invite you to schedule a Lymphatic Drainage Massage and set up the support system that your body has been seeking.
Use the code REMADE to get 15% off your first session.
Click the link below to get started.
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