Skip to Accessibility Tools Skip to Content Skip to Footer
A woman in bed experiencing a flare up

What an AS Flare is Like

If you don’t deal with chronic pain or illness, you’re probably wondering what it’s actually like to experience a flare-up. Lucky for you, I’ve been through enough for a lifetime, and I’m here to explain what they feel like.

Waking Up in a Flare

Waking up to discover that you’re in another flare-up is disheartening. Again? I’m waking up at 6:30 am in pain again? For the second or third time this month, you’ll have to spend most of the day in bed. You had plans, you had chores to do around the house, and now that’s all on the backburner.

When I wake up early in pain, I tend to be awake in bed for hours. I fall back asleep at some point, and I’m out cold for a few hours due to how tired I am. Then I wake up again around noon and try to finally start the day.

You finally muster up the energy to get out of bed. You may need your mobility device, or you just result to limping around the house slowly. On this particular day, you have a haircut scheduled. You want to cancel, but it’s too late to do so.

Going out during a flare

If you don’t drive, like I don’t, then you’re lucky enough to have to use public transit to get around. Those seats aren’t comfortable for anyone, let alone someone experiencing a flare-up.

You finally make it to the salon and prepare to put on a happy face for an hour. Personally, I don’t talk much due to my social anxiety, so the last thing I would do is mention that I’m in pain, or bug them for an extra pillow for support. I know this is bad and I should just do it, but I feel like a bother.

The haircut goes well, as usual, and I’m back on the bus and in bed shortly after. The seats are comfortable, but nothing beats lying in bed with a hot pack or heating pad on. Also, just going to the salon alone takes up enough energy for one day, so back in bed, it is.

Taking it easy

When your body is flaring, the number one thing to do is to take it easy. Listen to your body. If you don’t, you’ll just burn out a few days in. Some of us learn that the hard way, and trust me, it’s a hard lesson to learn. Especially when you’ve already made plans and the flare pops up unwanted.

Sometimes our routines have to be pushed aside. For example, I like to do yoga to help my joints on most days. During a flare, I don’t have the mental or physical energy to be able to do yoga. When I am able to do it again, I have to start gentle and get back into it.

It’s okay to have to take a break from our activities from time to time. It’s also important to realize that this flare-up is temporary and will go away.

Sleeping with a flare

Sleeping while experiencing a flare-up is incredibly difficult. I’ve dealt with insomnia multiple times in my life, but this is different.

When your body is in excruciating pain, it’s almost impossible to focus on anything else. It’s also nearly impossible to be comfortable. Finding a position that doesn’t hurt too much but is also comfortable enough to sleep in is a mission. Most nights, I can’t sleep till around 2-3. Back when I was undiagnosed and flaring, I spent night after night being awake until 6 am in pain.

Basically, when you finally fall asleep, it’s because your body is exhausted and so is your mind. You pass out and get a few hours here and there if you’re lucky. Even though you’re so fatigued, sleep is incredibly difficult to come by during a flare.

Daily life with a flare

Daily life with a flare is hard to deal with. Between sleep, chores, having to take it easy, and just about everything else, it’s definitely not easy. These are just a few of the things that those of us with chronic pain deal with when we flare-up.

It takes an incredible amount of physical and mental strength to go through flare after flare, year after year.

Be sure to tell the people in your life who experience pain flare-ups how strong and resilient they are, because they’re fighters.

This article represents the opinions, thoughts, and experiences of the author; none of this content has been paid for by any advertiser. The AnkylosingSpondylitis.net team does not recommend or endorse any products or treatments discussed herein. Learn more about how we maintain editorial integrity here.

Comments

  • Lisa Marie Basile moderator
    2 days ago

    Steff,
    Thank you so much for this. Honestly, this is a really great run-down of what’s it’s like bc people think of it as SO nebulous…like, “so you’re just feeling kind of crappy?” they’ll say.

    In reality, it’s bigger and more all-encompassing than that, as you say. When you write, “The haircut goes well, as usual, and I’m back on the bus and in bed shortly after” this makes sense to me. It’s like you do *normal* stuff and then you’re zonked out.

    I always think about how people have colds or the flu and they go about their chores. Everyone can see/hear the flu, so they’re like, “you poor thing!”

    For us, we’re just silently going through the motions. And it can be hard. Thanks for your thoughtful words here!

  • Steff Di Pardo moderator author
    2 days ago

    Hi Lisa Marie,
    Oh my gosh, thank you so much for the kind words! I’m so glad that they resonated with you. It can be so difficult to explain to those around us what we’re going through when they see us in pain. Or maybe, they don’t see us in anything, so we have to try and help them see what they can’t. I hope you’re feeling okay! Sending hugs

  • Lawrence "Rick" Phillips moderator
    6 days ago

    Ahh I hate flares. When I get one I get grouchy, my blood sugar goes off the charts and that just makes it worse. I am sorry you are having this Steff. I suggest a new AS band, we will call it death to flares. We can play punk rock and jump all over the stage for exercise. Unless of close we are having a flare. Then will just wont show up for gigs. In other words, Death to Flares.

  • Steff Di Pardo moderator author
    2 days ago

    Hahaha Lawrence, you’re too funny! I love Death To Flares. We can do all of our stretches and exercise, we may look crazy, but we can let our anger out!

  • Lisa Marie Basile moderator
    2 days ago

    Whoa, that sucks, Lawrence! can I join the band? (I’m just out of a flare up but I feel the echoes of it calling my name again).

  • Lawrence "Rick" Phillips moderator
    2 days ago

    You are in Lisa. We need a good trombone player, with an awesome limp. Or a great limper who sort of dances around and breaks a fake trombone every night. We can use either.

    We will only use recorded music, mostly of Millie Vanilli on 4 times speed and on a loop.

    I think stardom awaits.

  • Poll