What My Body Tells Me Before an Ankylosing Spondylitis Flare-up

Living with ankylosing spondylitis means dealing with flare-ups. I am not symptom free, so the level of symptoms I am used to day to day is what I refer to as my "baseline". A flare-up is a period of time when my symptoms increase from my baseline. So, what are some of the signs that my ankylosing spondylitis is starting to flare-up?

Subtle shift in physical symptoms

The clearest sign that I’m starting to flare up is an increase in my ankylosing spondylitis symptoms. My morning stiffness in my back and hips is worse and lasts longer. The unmistakable pain in my sacroiliac joints becomes harder to ignore.

Although an increase in symptoms is the most obvious sign that my ankylosing spondylitis is flaring up, I actually find it the hardest sign to notice. In my experience, a large part of living with AS and fibromyalgia is to ignore it. I’m not always very in touch with my body, because that means tuning into the pain.

So, what are some of the other flare-up signs?

Changes in emotional wellbeing

When my symptoms increase, my emotional wellbeing suffers. I often will notice that my threshold for becoming overwhelmed is much lower. Tasks which I don’t usually find stressful become difficult to do, and I start to fall behind with things.

I can get irritable and snappy about things that don’t usually bother me too much. I don’t feel like socializing and stay in more. I lose motivation and don’t enjoy my hobbies as much. These can all be indications to me that my AS symptoms are increasing.

Disrupted sleep quality

Before I was diagnosed with AS, one of my most persistent symptoms was waking up in the night. I didn’t sleep through the night for about 2 years before diagnosis. One of my clearest signs of an ankylosing spondylitis flare-up for me is that my sleep becomes more disrupted. I wake up in the night with joint stiffness and find it hard to get back to sleep.

One of my most obscure symptoms is that I start to feel pain in my dreams. It’s a similar to when you dream that you need the toilet before waking up to pee. Except, it doesn’t always wake me up. Sometimes, I’m just moving around with joint pain in my dreams. Although this is one of my strangest symptoms, it’s often the one that makes me recognize my ankylosing spondylitis is starting to flare up.

Why noticing flare-up signs early is key

For me, catching a flare-up early is crucial to managing the flare-up and minimizing the impact it has on my life. I can slow down and give my body more time to rest. I can contact my health providers to get advice and medication to help my symptoms, rather than getting to a point where I am completely run down and overwhelmed before getting support.

Flare-ups are not easy, and recognizing them isn’t either. Each time I get through a flare-up, I try to think about whether there were any hints that it was starting. Sometimes it’s easier to recognize the hints when you look back rather than at the time, and that can help you notice the flare-up sooner next time.

What are your signs that you’re heading into an ankylosing spondylitis flare?