What a Lupus Flare Feels Like

A flare is one of the hardest things to describe about having Lupus. As a writer, that’s a maddening thing. A large part of what I do is finding just the right words to describe something. Feeling these crazy sensations and not being able to convey what that’s like… It does not compute.

One reason it’s hard to describe is because, in my experience, no two flares are ever the same. The first one I ever had caused my hands and feet to swell until it felt like they were going to explode. I’ve never had that sensation again. My usual flares present as red rashes on my arms and legs, along with extra fatigue, muscle pain, and brainfog. I’m having one right now, which is mostly those last three things, but in excessive amounts.

So, I turn to my old frenemy, Prednisone. Or as Lupus patients like to think of it…

…”Satan’s Tic-Tacs.”

I’m fortunate in that my doctor allows me to regulate my Prednisone use myself. I have a standing prescription to always keep some on-hand, so that when a flare strikes, I’m ready. But I still hate taking it.

Yes, Prednisone is horrible. Yes, it’s also helpful. It typically gets rid of my symptoms, but it also makes me feel like this:

And also this:

And usually this:

The weird thing about this particular flare is that none of those things are happening. And my symptoms aren’t really subsiding. This is a first. Does it mean the flare is stronger than a high dose of Prednisone? Yikes, what a thought.

But there’s more. In my book there’s a chapter called “Prepare for Weirdness,” where I talk about odd, inexplicable symptoms. This flare has given me a new one: Nothing tastes good. I get hungry, I want to eat, but everything tastes like cardboard.

Explain that.

This one is also doing its best to bring Depression back into the game. Depression is usually kept in check by my meds, but it’s just a power struggle in the end. If the flare is stronger than the anti-depressants, guess who wins?

And without over-sharing… Let’s just say that stomach issues are becoming a big problem as well.

But like I said at the beginning, there’s other stuff going on inside, strange feelings I don’t know how to describe. I’m not talking about emotions. This is physical stuff. Stuff that just feels… off. A kind of pain, maybe, or a weird imbalance of how things are supposed to be. It’s like the default factory settings have been tampered with, and now nothing is working the way it should.

I wish I could explain a Lupus flare to someone who’s never had one. I’ll keep trying.

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