Your SpAce - Flares

Most people with axial SpA tend to have times when their symptoms get worse or flare up, and times when their symptoms are more manageable or settled. A flare can include an increase in pain and joint stiffness.

Fatigue is often worse during a flare. This is an overwhelming feeling of physical exhaustion. You can also experience mental fatigue. Some people call this brain fog.

Each person with axial SpA experiences flares differently. Even for the same person, often no two flares are the same. If you’re experiencing flares very frequently or you’re struggling to manage them, speak to your healthcare team for personalised advice.

Experiencing a flare, especially if it’s for the first time, can be a stressful or even frightening experience. During a flare and when you’re in pain, it’s important to have tools to help you relax and manage your stress levels. Remember, different things will work for different people.

In this section of Your SpAce, we’re sharing ways to prepare for a flare. This will help you manage the symptoms you experience and look after your emotional wellbeing. Over time, you’ll feel more in control and it will reduce the impact that flares have on you.

As you work through these videos, get involved in the comments. When you’re ready, join one of our monthly online meetings. You’ll meet other people with axial SpA and get support to put this advice into action.

Axial SpA flares can be unpredictable, so planning for them can help you feel more prepared and in control. Tracking your symptoms over time can help you monitor your condition and identify anything that might trigger a flare. You’ll feel more in tune with your body and notice if a flare may be starting. This allows you to take steps to ease or prevent the flare, or to plan around it.

You can track your symptoms in a paper diary or through an app. We’ve shared an example symptom diary in our resources below which you can download and adapt. We also recommend the Chronic Insights app, which is available in the Google Play and Apple app stores.

Talk to your rheumatologist or GP about how you can adjust your usual medication during flares. Find out the maximum dose and ask if there are other medications you can add in during a flare. Use our resource sheet in the pain section to record the plan.

You may want to avoid high impact activity, such as running, during a flare. It’s still important to keep moving regularly to reduce your pain and stiffness. Gentle stretches, short walks and swimming can be more comfortable. Speak to your physiotherapist for a flare-friendly exercise routine if you struggle to be active during a flare.

There are lots of tools that can be helpful to manage your axial SpA flares, alongside medication and advice from your healthcare team. Watch our video on creating a flare toolkit for more information.
Flares can bring up lots of emotions. Sometimes you feel like you’re doing everything right and still experience a flare up. That can be part of the unpredictable nature of axial SpA. Some people also find that stress can trigger their flares or make them more sensitive to pain. This is because the body releases the hormone cortisol in response to stress.

So, during a flare, make sure you’re looking after your emotional wellbeing. Check out our emotional wellbeing resources linked below to find what works for you. You can try some guided meditations and breathing exercises. Or you might prefer to watch a good film or listen to your favourite music. Anything that helps distract you or lift your mood.

It can be difficult for family, friends and colleagues to understand that on some days you may look the same, but you could be dealing with a lot of pain and fatigue. Explaining your condition and how it impacts you can be useful. Try to have these conversations on a day when you’re not flaring.

Day to day, you can use a visible prompt to let the people around you know how you’re feeling. For example, the NASS colour-coded wrist bands, with green for a good day, orange for an okay day and red for a bad day. This can give a heads up to the people around you without having to explain how you’re feeling each day.

We know that no matter how much other people understand your condition, it can still be stressful or frustrating when you have to cancel or alter plans. Treat yourself with kindness and compassion. Take things an hour at a time and remember that this flare will pass.

Finally, keep a note of your healthcare team’s contact details. Contact them if you need advice or if your usual self-care techniques aren’t working. Watch our next video to see Wendy and Ben’s flare toolkits and get some inspiration. Then, share with us in the comments below – what do you find most helpful during flares?

Sometimes parts of my body feel really hot where the inflammation is. I get quite a bit of swelling in my joints, especially my toes and feet, or my hands or thumbs. And there’s just this feeling of feeling really, just so, well this terrible fatigue that comes over you. My body’s telling me that I just can’t do anything and I just have to listen to what my body’s saying.

Sometimes I don’t have a flare for three or four months. I think I used to have more flares that didn’t last as long. Now I seem to get them a little bit less often, but they last longer.

My triggers are if I do too much. Real life is busy. Instead of doing something today and something tomorrow, I do as much as I can in one day and then of course that can trigger a flare. If I do have any, kind of, big stress, that can bring on a flare. Doing too much, maybe even doing too much exercise can also trigger a flare, so it’s just about, it’s just about balance really.

Things like heat pad, an electric heat pad, is amazing. And also things like a wheat pillow that you put in the microwave and you heat it up and you can put it around your neck. I’ve got wrists splints for when my wrists are really painful and it’s hard to move them, I wear wrist splints. I’ve got so many things, but again, you just find what works for you. Sometimes for me, when I have inflammation, the area can feel really hot. So sometimes you want an ice pack on it. People just find out what works for them.

In a flare, the last thing you want to do is be thinking “oh I could do with this and I could do with that”, so having everything there just in case you need it is a really good thing to do”. I have a drawer, erm, for smaller things and then there’s a couple of shelves in cupboards that have my bigger things. So, you know, I know that if I need my heat pad I know where it is. So, it is really good to have your toolkit very accessible for when you need it.

I think relaxation’s very important when you’re in a flare. Because, obviously your body’s in a flare, it’s feeling horrible, erm, it’s not a nice feeling so for me relaxation is key to helping me through a flare. The emotional side of a flare is sometimes worse than the physical side, than the pain. My emotions come out as, for me, I feel this anger of “I don’t want to be having this flare, I don’t want to have this pain”. When you’re in it, you’re thinking “this is never gonna end” and it feels like that, it feels like “wow, this is just going to go on and on and on”. And you know inside that you’re going to come out the other side, but while you’re in it, it’s really hard to think past that flare.

I found that being part of a NASS branch, or just talking to other people that have got AS. People you come into everyday contact with, they don’t understand about AS, so when you get to talk to other people and you have groups online, on Facebook or whatever, it’s so helpful. It’s one of the best therapies that there is, really. Talking to people that understand it so you can say “oh, you know, I just feel so tired every day” or, you know, “I have a flare and I feel angry”, and people say “oh well I feel angry too” and you think “wow! It’s not just me, you know, it is an actual thing!”. So talking to other people with AS, finding some sort of support network, especially with people that have AS is a really really useful thing.

I know when I’m having a flare, I get stiffness in my neck, which even the medication can’t keep under control. As the meds do such a good job, my flares are much more fatigue-related and affect me on a much more emotional level, rather than physical. Apart from the obvious exhaustion and fatigue effects, I tend to get brain fog and irritability and frustration, which can leave me feeling pretty low and annoyed. Luckily my flares currently only happen about once a week and for up to 24 hours, although I’m fully prepared for that to increase in duration and/or frequency. At the moment, while still very much in a positive period with my meds, I can still do my hobbies, which kind of contradicts the whole exhaustion and fatigue thing.

I find, however tired that makes me feel after or in the lead up, the benefits of still maintaining something that looks like my used to be, far outweighs anything else. I also find that just being as positive as possible, which of course can be very difficult at times, really pushes me forward. And when I just throw myself into things like sports, my work, and my family life, it definitely distracts me from the problem. Healthy distractions are key for me, really.

Trying to be grateful is something that really gets me through sometimes. No illness is nice and there are people with far worse conditions than I have and today I’m relatively pain-free. I have a family and friends who love me, and want the best for me, and I can detach myself from those negative feelings, as I know that whatever bad stuff is going on, it will pass.

Being transparent with the people around you is a great tool in itself, and you can alleviate some of the pressures of feeling like you’re letting people down. The people closest to me often say that they forget I have AS sometimes, which is wonderful to hear, but also can give a false reading of how you’re actually feeling. Other than all that, positivity, exercise, and just doing everything you can to be as normal as you used to be.