Understanding the different types of fatigue that come with vasculitis
Learning to tell the two versions apart is essential
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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.
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.
Tonnie Van De Hatert
Deze vermoeidheid is totaal anders dan de normale vermoeidheid die ik vóór mijn ANCA‑GPA kende. Het is geen ‘gewoon moe zijn’, maar een allesoverheersende uitputting die mijn hele functioneren beïnvloedt. Zelfs nu, jaren later, veroorzaakt het nog steeds enorme ergernis omdat het zo onvoorspelbaar en intens is.
Audry Trahan
Where's the rest of this important article? It just ended without any satisfaction - without any treatment.
What does a flare look like? My labs are great, comparatively. Still have MPOs, a blister in my mouth, inability to cook a meal or take a shower, things that overwhelm me. I turn on my computer. A five minute task takes an hour. I have a rollator and an electric wheelchair. I couldn't get out of the house without them. They give me freedom - as long as my husband can get the wheelchair in and out of the car.
What has your doctor done to help with profound fatique?
Taylor Powers
This article was SO valuable to me. I feel seen and heard!!! Thank you so much.
Joan S. Lohr
I’m just beginning my 7th year with ANCA Vasculitis associated GPA, and fatigue is paramount each day..trying to keep a social ball in the air is impossible or make a date a week away not knowing state of my body and brain. My husband Ed, has been by my side each day since diagnosis (kidney biopsy) and understands this disease except for fatigue I face 24/7..Not sure how to describe it, but this article relates to my condition. No amount of exercise or physical activity help along with vitamins..I will continue to have faith in a cure or means to live with this awful disease..few can understand this condition..actually blow it off as old age..84 years, not that old!!
Susan Major
This was helpful to me. I’ve been frustrated with trying to convey to my specialist what my fatigue feels like every day. I was confused about why no suggestions were offered for treating it.
Your article helped me realize that this fatigue is part of the whole GPA experience for me even when I’m stable.
The only suggestion ever given to me, was to pace myself, which I do. It’s almost comical how my tasks require being broken down into so many small steps in order to accomplish anything. I do manage to get things done, though the new normal is still frustrating.