The importance of rest in managing vasculitis-related fatigue

We need to talk about fatigue again.

After my recent column about the different types of fatigue, I heard from many of you through comments, emails, and shared personal journeys, all saying the same thing: This part is hard. And it doesn’t get talked about enough.

I wish I had a solution. A fix. A trick that made it go away. I don’t.

What I do have is what I’ve learned from living with ANCA-associated vasculitis, and most of it comes down to something deceptively simple: rest. Not pushing through. Not powering over it. Not pretending it’s just being tired. Actually resting.

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Rest is restorative

There is growing research suggesting that deep rest can be highly restorative — in some cases, offering physiological benefits similar to those of sleep. I plan to write a full column on this because it’s genuinely fascinating. And I believe the more we understand what’s happening in our bodies, the better we can manage this disease.

If I listen to my body and rest when needed, I can recover enough to move forward. If I don’t, I pay for it — sometimes for days. That’s when the fatigue deepens into something heavier, often paired with chills and a kind of full-body malaise that’s hard to describe unless you’ve felt it.

Before my diagnosis, coffee could carry me through. It could override a rough night or a long day. Now? It might help my brain wake up in the morning, but it doesn’t replace the rest my body needs. That shift alone took time to accept.

One of the biggest changes I’ve made is learning my timing. Over the past couple of years, I’ve noticed a pattern: About three hours after I wake up, I hit a wall. Not a gentle dip — a you-need-to-lie-down-now kind of moment. That three-hour window seems to be my baseline stamina. After that, I usually need another rest period or two to get through the day.

So I plan around it. Not perfectly. Not always successfully. But intentionally.

That might sound restrictive, but it’s actually given me more control. Instead of constantly reacting to fatigue, I anticipate it. I build my day with it in mind. That shift — from reacting to planning — has made a meaningful difference.

I also track it.

Tracking my fatigue

Fatigue, along with chills and malaise, has become one of my earliest warning signs that something might be changing with my disease. Before lab values shift or a full flare develops, my body often tells me first.

When my fatigue pattern changes — when it becomes more intense, more frequent, or different in character — I take that seriously. I share that data with my doctor, and sometimes that leads to early intervention, like a short course of prednisone to get things back under control. It’s not ideal, but it helps.

One tool that’s made tracking easier is the personalized quality-of-life tracker developed by the Eosinophilic & Rare Disease Cooperative. It takes a little time to set up because you customize it based on your specific symptoms and what affects your day-to-day life. But once it’s in place, it becomes a powerful way to spot trends — to see whether what you’re experiencing is a one-off day or the beginning of something that needs attention.

Beyond tracking and planning, I’ve built a set of practical habits — small things that make fatigue more manageable:

• I prioritize rest, even when I don’t sleep. Deep rest can still be highly restorative.
• I use an eye mask with flat headphones and white noise. It helps create a consistent, quiet environment, and over time, it’s trained my body to recognize that it’s time to rest.
• I keep a small pillow in my car. If I’m out and hit a wall, I’ll recline the seat, lock the doors, set a timer for 10 minutes, and close my eyes. That short reset is often enough to help me finish what I need to do.
• I talk to my doctor about fatigue every time. I treat it as seriously as any other symptom — because it is.
• I allow two to three times as long for everything. What used to take me 20 minutes now might take an hour and a half, because I build in time to rest.
• Fatigue can feel like depression and can overlap with malaise. It’s important to try to understand what you’re experiencing. For me, addressing the ongoing grief — including with medication — has been helpful.
• And maybe most importantly, I’ve worked to stop apologizing for it.

That last one is still a work in progress.

There’s a temptation to explain, to justify, to push through so that you don’t inconvenience anyone. But the reality is that the people who care about me get a much better version of me when I rest than when I don’t. So I try to honor that, and when I don’t, I try to forgive myself, too.

Fatigue with ANCA vasculitis is information. It’s communication. It’s often one of the earliest and most persistent signals our bodies give us. Learning to listen to our fatigue — even when we don’t like what it’s saying — is part of living with this disease.

As always, I know there’s so much wisdom in this community. What have you learned about your fatigue? What helps you manage it? Please share in the comments below.

Note: ANCA Vasculitis News is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of ANCA Vasculitis News or its parent company, Bionews, and are intended to spark discussion about issues pertaining to ANCA vasculitis.