Understanding the different types of fatigue that come with vasculitis

In our ANCA vasculitis community, the real F-word is fatigue. And I need to say something about it plainly: What we experience is definitely not the tiredness that healthy people know.

Fatigue in vasculitis is not just sleepiness. It is not the grogginess after a bad night’s sleep or the weariness at the end of a hard week. It is not something we can push through or fix with coffee. When most people say they’re tired, they are describing something that exists in an entirely different universe from what many of us live with.

I describe our F-word as walking through concrete; every step costs something. On the worst days, I’m so fatigued that chewing hurts. The act of eating — something most people do without a second thought — becomes a tax I am not sure I can pay. When fatigue hits hard, it arrives like a sledgehammer. One moment, I am functioning; the next, I simply have to sleep. Words disappear. Coordination becomes unreliable.

Before I got sick, I thought I understood fatigue. I spent years working in the Parkinson’s disease community, educating patients and care partners and designing programs. I believed I had real insight into what profound exhaustion felt like.

I did not.

I say that not to dismiss the empathy I tried to bring to that work. Nor do I want to diminish the people who are trying to understand our experience. But in reality, you cannot fully understand this from the outside. Getting sick, which I do not recommend if it can be avoided, provides a level of education that there is no degree for.

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Not all fatigue is the same

One of the most important things my doctor has taught me is that there are actually two versions of our F-word, and learning to tell them apart is essential. It has helped me manage my disease and have more effective conversations with my doctor. This is especially true when labs have not caught up to how I am feeling physically.

The first kind of fatigue is my baseline fatigue — the chronic kind that comes with having eosinophilic granulomatosis with polyangiitis. Some of it stems from damage done before I was diagnosed and started treatment that helped control my disease. Some of it is simply the cost of carrying a serious illness every day. This kind of fatigue won’t reverse. It is mine, and I have learned to move within it and pace myself and my energy.

The second kind is a signal. It tells me something is shifting — that a flare may be approaching or is already underway. This fatigue has a different texture, a different weight. It doesn’t feel like my usual F-word, but like a warning. For me, it often comes with malaise and the feeling of just not being well, almost flu-like. This is often one of the first signals that my disease is not being managed. It often appears before labs, if any, show that my disease is not controlled. My rheumatologist explained that this type of fatigue is as important as the lab data, and she treats it as such.

Learning that distinction took time and close attention — to my body, to my patterns, to what comes before a flare versus what simply comes with everyday life. If you’re still figuring it out, all I can say is that it is important we are patient with ourselves. This is a marathon, and the first few years can be bumpy. Eventually, you will recognize the differences in your body and learn strategies to live well, even with fatigue.

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.