Axial Spondyloarthritis Flare: What a Bad Day Feels Like

Living with axial spondyloarthritis (axSpA) is full of surprises.

Some days, I think, “Okay, this is not as hard as I thought. I can do this.”

Then there are days when I wake up and my body feels completely different.

On a bad axial spondyloarthritis flare day, I feel like a deflated balloon. My body feels heavy, my energy disappears and even getting out of bed can feel like a huge task.

Sometimes, the hardest part is that my body doesn’t let me do the things I want to do, but it also doesn’t let me properly rest.

The idea of doing nothing sounds easy but when you’re uncomfortable in every position, even resting becomes difficult.

I know I sound dramatic, but honestly, that is one of the hardest parts for me.

Some days, living with axSpA feels manageable. Other days, simple things like climbing stairs, bending down, or picking something up from the floor require much more thought and effort.

I wanted to share what a bad axSpA flare day feels like for me. Not because everyone experiences it the same way, but because I know how lonely chronic pain can feel.

Sometimes, reading about someone else’s experience is enough to remind you that you’re not the only one going through it.

How Axial Spondyloarthritis Affects My Everyday Movement

During a flare, my body doesn’t move the way it normally does.

Things that used to happen without any thought suddenly require planning.

Standing up, sitting down or getting comfortable in bed can become a process of trial and error. Certain movements like bending, twisting or lifting my leg, can sometimes trigger a sharp pain that makes me stop halfway.

I never realised how many small movements we make every day until they became difficult.

One example is putting on trousers.

Standing on one leg used to be something I did without thinking. Now, I sometimes have to carefully plan how I move because I don’t want to make the pain worse.

Even picking something up from the floor can become a challenge.

Before my diagnosis, I never noticed how much my body quietly did for me every day.

Now, I notice those little things.

The Emotional Side of a Flare

A bad flare isn’t just physically difficult. It affects me emotionally too.

I feel frustrated.

I feel lonely.

Sometimes, I don’t feel like talking because I worry I might become impatient or say something I don’t mean.

I miss the version of myself who could move freely without having to think about pain.

On difficult days, I find myself wondering how long the pain will last. Sometimes, the thought that this could become my new normal creeps in, even though I try not to let it take over.

It can feel like all the progress I’ve made in accepting my condition disappears during one particularly difficult day.

One moment, I feel like I’m handling everything well.

The next, I find myself quietly thinking, “Why me?”

Living with chronic back pain can feel very lonely, even when you have people around you who care.

What Helps Me Get Through a Bad AxSpA Day

I Try to Be Kind to Myself

I’ve always found it easier to be kind to other people than to myself.

On difficult days, I try to remind myself that it’s okay to struggle. I don’t need to pretend that everything is fine or feel guilty for having a bad day.

Sometimes, simply accepting that I’m having a difficult day makes things feel a little lighter.

I Keep My Expectations Realistic

I usually make a small list of things I’d like to do but I try not to expect too much from myself.

Some days, making the bed or having a shower is enough.

Those small achievements still count.

Instead of focusing on everything I can’t do, I try to focus on what I can do that day.

I Keep Moving, Just a Little

On bad days, staying in bed all day can feel very tempting. 

However, I’ve noticed that my body usually feels even stiffer when I don’t move at all. 

So I adjust my usual routine. I might do some gentle stretching, walk around the house or just make small movements that feel manageable.

I’m not trying to push through the pain.

I’m simply trying to keep my body moving in a way that feels right for me.

I Use Heat or Cold Depending on How I Feel

I’ve learned that everyone responds differently.

Personally, I usually find cold compresses helpful when my pain is worse. On days when stiffness is the main problem, warmth feels more comforting.

It’s a small thing but finding what works for my body has made difficult days slightly easier.

I Keep Warm

Cold weather and I are definitely not friends.

I wrap myself up, stay cosy and usually have a hot drink nearby.

It sounds simple but these little comforts make a difference when my body is already struggling.

What I’m Still Learning

One thing I’m still learning is to treat myself the way I would treat someone I love.

I don’t always tell people when I’m having a bad day. My family is incredibly supportive but sometimes I don’t want to worry them.

It can also be difficult when your pain is invisible.

People may not always understand how much something affects you when they can’t see it.

If you’d like to know what things were like for me before my diagnosis, you can read Recurring Back Pain Before My Axial Spondyloarthritis Diagnosis.

When I need reassurance, I sometimes read other people’s experiences in support communities. Seeing how other people navigate life with chronic illness reminds me that I’m not the only one going through this.

Some days are difficult.

Some days are better.

Some days I feel almost like myself again.

And on the harder days, I remind myself that getting through the day is enough.

Small wins still count.

You Are Not Alone

Living with axial spondyloarthritis can feel lonely at times.

If you’re living with axSpA, chronic back pain or another chronic condition, I hope sharing my experience helps you feel a little less alone.

This is what a bad flare day can look like for me. Everyone’s experience is different but sometimes knowing that someone else understands can make things feel a little easier.

If you’d like to read about how I eventually got my diagnosis, you can read My Axial Spondyloarthritis Diagnosis Journey.

If you’re having a difficult day today, I hope you’re being kind to yourself.

Thank you for reading.

Lots of love,

Ling