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Your SpAce - Fatigue

Managing your fatigue

Welcome to Your SpAce. Here we build skills together to live life with axial SpA.

Your SpAce is for anyone with axial spondyloarthritis (axial SpA), including ankylosing spondylitis (AS). Whether you’ve just been diagnosed or you’ve been living with the condition for years, Your SpAce is here to support you.

This page is focused on managing fatigue. Fatigue is not just tiredness. It’s an overwhelming feeling of exhaustion. It can be physical, mental, or both. Fatigue can be a tricky aspect of axial SpA to get under control. So this page shares tools to manage your energy levels, as well as explain your fatigue to the important people in your life.

We’re a community, so take your time watching the videos and do get involved in the comments sections. We can help each other by sharing experiences and advice.

What is fatigue? Why do people with axial SpA experience it?

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Fatigue is not just tiredness, it’s a feeling of overwhelming exhaustion. It can be mental or physical, but it’s usually felt at both levels. It’s not something that a couple of nights of good sleep will solve, either. People with axial SpA can experience fatigue because of the condition itself, or because their pain is disrupting their sleep. Frustratingly, it may even get worse with long periods of inactivity.

It’s important to make your rheumatologist aware if you’re experiencing fatigue, as they will take this into account when looking at how your axial SpA is managed. Medications which help to control inflammation in axial SpA may also help to reduce the fatigue you’re feeling. If you’re taking medications which cause drowsiness and loss of concentration, then speak to your GP or rheumatology team about possible alternatives.

You may be referred to an occupational therapist to discuss ways to manage your energy levels and reduce the impact fatigue has on your life. It can also be helpful to speak to a physiotherapist, as they can help you gradually increase your activity to build your muscle strength and stamina in a safe way. Regular activity is also important for managing your axial SpA overall. Check where your nearest NASS branch is if you’d like to join regular physiotherapist-led sessions.

It’s important to note that other health conditions, such as anaemia, can cause fatigue. Speak to your healthcare professional if you’re experiencing new or severe fatigue. You can also speak to them if you’re experiencing low mood or depression. This is because as well as affecting your emotional wellbeing, depression can cause physical fatigue.

In this section, we share some practical ways to manage your energy levels. It’s important to remember that there are lots of tips that may be helpful, but different things will work for different people. It’s about finding what’s right for you. You can revisit this page over time to add in different techniques as you find what works for you.

Do speak to your GP or rheumatology team if you’re struggling to manage your fatigue and these techniques don’t help.

When you’re first diagnosed with axial SpA, it can be difficult to come to terms with. The road to acceptance can be long and scary. But remember, you can live a fulfilling life with axial SpA. As you find practical tools to help, your confidence will increase.

Making sure you have a good support network is key. This could be your friends, family or colleagues. It could also be other people with axial SpA. Speaking to others with the same condition can help when you’re experiencing fatigue. It’s easy to feel hopeless when you’re exhausted, but other people can give you hope, knowing that things will improve.

If you find it difficult to speak to others about your condition, then watch our final video in this section.

As you work through this section of Your SpAce, please get involved by sharing your experiences and asking questions in the video comments. Then when you’re ready, join one of our online meetings to meet other people with axial SpA, to learn ways to put our advice into action.

Understanding fatigue

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Before looking at making any changes, it can be helpful to spend some time tracking your energy levels and your activities. Take a look at the activity diary in our guide to fatigue. You track your activities over a four-week period, recording when you spend time doing a high energy activity, low energy activity, periods of rest and relaxation, as well as sleep.

It’s easier to look at your activity over a longer period like this. You may start to notice some patterns.

It’s very easy to get into a boom-and-bust cycle, where you do lots of activity on one day, then have days afterwards with less energy, needing to rest and recover. It’s natural for this to happen occasionally, but if you get into this boom-and-bust cycle for a longer period, it can gradually deplete your energy stores and reduce your overall fitness. So over time, you’re able to do less.

It can be difficult to predict your energy levels or recognise if you’re in this boom-and-bust cycle, but the activity diary can help. If you manage your energy levels well overall and pace yourself on the ‘good days’, you’ll gradually be able to do more.

The nature of axial SpA means that your symptoms will fluctuate over time. Sometimes, even when you’re doing all the right things to manage your condition, you may still find you feel really fatigued. When this happens, it’s really important to remember to be kind to yourself and not feel like somehow you’ve caused it. Use the self-care techniques we share in this section and our flares section to help as you build your energy back up gradually.

It’s also natural that there will be some days when you want or need to do more than you feel able to. You know that you’ll experience more fatigue in the days afterwards. This is also okay – you’re human! You can’t pace perfectly 100% of the time. The best thing to do is to plan ahead and set aside a few days afterwards where you can rest more and do less demanding things. Allow yourself that time to recover. It’s about getting that balance and pacing well over a long period of time, not perfectly every single day.

It’s normal to feel frustrated that you need to manage your energy levels. It can feel worse when you compare what you can do to other people. I’ve lived with axial SpA for over ten years and I still get frustrated at times! Support yourself through this by learning more about your condition, understand which healthcare professionals are there to support you, and meet other people with the same condition, to get support and share experiences. That’s what this community is here for.

In our next video, we’ll share some practical tips on pacing your activity to manage your energy levels. Let us know in the comments below if you try the activity diary, share what you learn and whether it helps you avoid the boom-and-bust cycle more.

Discover ways to manage your energy levels

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Managing fatigue is all about balancing your activities to manage your energy levels over a long period of time. If you haven’t already, do watch our video on activity diaries and the boom-and-bust cycle. This is a good starting point before trying the tips we explain in this video.

It can be helpful to think of your energy levels as a battery. We want to be mindful of where our energy levels are on that battery, make sure we’re using it in moderation, and when it’s getting lower, taking time to recharge.

Managing your energy really comes down to the four Ps: planning, prioritising, pacing and problem solving.
Planning ahead can make a really big difference. Look at your tasks over a week or two. If you see a busy day, perhaps you can prepare some easy meals to save energy? Or schedule a more restful day afterwards, giving yourself time to recharge?

Perhaps if you have a very physically demanding day, you could plan to spend the following day doing something more restful. If you have a mentally draining day, are there more physical tasks you need to do the next day?

Lots of people with axial SpA find stress makes their symptoms worse. So, it’s essential you take time for yourself and plan time for whatever you find relaxing. Use our resource sheet below to brainstorm restful and relaxing activities. When you’re stressed or feeling fatigued, take a look and pick something that feels right for the moment.

Do also plan in time for physical activity – being active helps to manage your axial SpA, build your muscle strength and improve your stamina. Moving little and often can help comfortably build activity into your day without affecting your fatigue. Make sure to start slowly and build up gradually. If you need any advice, speak to your rheumatologist or physiotherapist.

Importantly, if you’re looking ahead at the day or week and know it’s too much, either ask for help from others or we can move onto the second P and start prioritising. Prioritising tasks can help you plan your energy and your to do list can feel less overwhelming.

Our top tip is to use our task prioritisation worksheet below to divide tasks based on how important they are and how urgently they need doing. This means you can start with tasks that are the most important and most urgent. It can then be easier to take breaks or stop if your fatigue flares.

Some people find to do list apps easier than keeping a list on paper. Using an app, such as ToDoIst, means you can schedule different tasks over your week. If your fatigue flares and you need to move a task later, you can easily do this. I know I find this less difficult than looking at a big to do list when my fatigue is flaring.

The next P is pacing. Pacing is all about conserving your energy over a longer period of time. If you have large tasks that will be physically or mentally draining, can you break these down into smaller tasks to spread out through the day, week or a longer period?

It can feel frustrating to pause and return to an activity later. But, by doing this, you are giving yourself more energy to return with. This makes it easier and faster in the long run.

Once you get started with an activity, it’s easy to forget all about pacing. Ideally, you want to stop or change activity before feeling exhausted. Use a prompt, like a timer or alarm, to schedule rest breaks frequently. When we talk about resting, we don’t mean sleeping. You can pace restful activities into your day, such as doing admin or restful hobbies.

The final P is problem solving. It can be helpful to consider mobility aids and different devices to help with tasks. There are lots of tools available online that can help with things like cleaning and cooking. If you need any advice on what’s available, speak to an Occupational Therapist.

Sometimes you need to think outside the box – for example, do you find yourself going up and down the stairs lots through the day? On days when you’re feeling fatigued, perhaps leave a small box at the bottom of the stairs. When you come across something you need to take upstairs, place it in the box. Take a few things up together, rather than having to do repeat trips.

Finally, don’t feel overwhelmed by the tips we’ve shared in this video. Pick one small thing to incorporate into your routine for the next few weeks. Let us know in the comments how you get on. Once you’re ready, you can pick another to build in.

Our handy task prioritisation sheet can help you plan your activities. This can take some of the pressure off, while pacing your energy. Download a copy to print.

Download a copy to complete on your computer. Simply download the document, open with your usual PDF reader, click on the text boxes to complete, and then save a copy.

Download our sheet to make a list of restful activities. Keep it handy for those high fatigue days. Download a copy to print.

Download a copy to complete on your computer. Simply download the document, open with your usual PDF reader, click on the text boxes to complete, and then save a copy.

Explaining fatigue to friends and family

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We know it can be really difficult to explain fatigue to friends and family. Fatigue is often invisible and many people find it difficult to relate to. But it can have a huge impact on your life and on your mental health.

To help other people understand, you could ask them to read the Spoon Theory or the NASS guide to axial SpA. Both of these are linked below.

When you are talking to someone about your condition and how it affects you, try to pick a day when you’re feeling well. To help prepare for this conversation, fill out our flare toolkit sheet, available on the flare page of Your SpAce. Explain how your symptoms affect you. It can also be valuable to stress how symptoms can be unpredictable, changing from day to day, or even hour to hour.

Discuss a way you can share how you’re feeling each day. For example, NASS have silicone wrist bands in three different colours. Depending on how you’re feeling, you can wear a green band for a good day, orange band for an okay day and red band for a bad day. Similarly, you could have the same colour code on the fridge. It easily lets people know how you’re feeling without having to talk about it every day.

Share practical ways that they can support you. For example, on bad days can family members help with shopping for or preparing food? Can friends visit you for a coffee, rather than going out to meet somewhere?

When friends and family understand the impact fatigue has on you, it can be easier to say no to or reschedule plans. It can help them to understand that although you may not want to do this, it’s in your best interest to.

It’s worth remembering that even with understanding people in your support network, it’s completely normal to feel feelings of guilt, sadness or frustration with your condition at times. Often people find this happens when they’ve had to change plans or cancel due to their fatigue or pain. When this happens, be kind to yourself and practice self-compassion. Remind yourself that your wellbeing is important. Saying no when you need to is good self-care.

There are some practical ways you can process negative emotions, while acknowledging that your feelings are valid. If your friend had to cancel or adjust plans to look after themselves, would you speak to them the way you speak to yourself? Try writing a letter to yourself as if you were writing to a friend. Remind yourself that you are not to blame and you’re not a burden.

We know it can be difficult to talk to others about your condition. Was this video useful? Let us know in the comments below and share your tips, too.

If you like the NASS mood wristbands, you can order your own.
Please note, we can only post within the UK.

Ben’s experiences of fatigue

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Fatigue is the most prominent symptom I have with AS, it’s absolute exhaustion to the point of not being able to keep your eyes open, and for me I particularly get these mental blocks where I can stumble over words while trying to have a conversation, or even forget what I’m saying altogether. I deal with it as best I can, I can normally sort of brush it off, but I can’t say it hasn’t dented my confidence a little bit.

I can get very irritable, I can get very emotional, which was probably always the case anyway. I can get very frustrated when things aren’t going my way. It’s all stuff that can happen in normal life, but the AS flares and fatigue seem to amplify it and make it harder to deal with.

It’s really difficult to pin point when and where it’s going to strike. And I can wake up in the morning one day full of beans and within half an hour I’m yawning, just wishing I can go back to bed. I can have an incredibly active day and be totally fine, and then do nothing the next day and feel absolutely shattered. That kind of unknown brings about a sort of anxiety which sort of sits with you constantly. Sort of makes you dread certain days you know are coming up, and you sort of have to take every day as it comes, really, and just hope you have the energy you need, when you need it.

The thing that’s helped me with my fatigue the most is being able to say no to anything I don’t want to do and if I need to go to bed at 8pm, then I do exactly that and I give myself sort of time and rest that I need. That can be really hard sometimes with a young family that demand a lot of attention.

I’d be lying if I said that I avoided the boom-bust cycle. Whilst I do what I can, I have to work and in fact for my own mental health I have to exercise. So I can overdo it on some days, but I try to have a much calmer and more restful day the following day if I’ve had a particularly energetic day.

I try to have moments of calm, but you know, the truth is, from the moment I wake up and until the moment I go to bed, I’ve got things that I need to do and I’m not going to roll over and let it beat me. So, I can overdo it, probably on a daily basis. And I am in a bit of a catch-22, because sports is, to me, my meditation and it’s imperative to my mood, so I have to do it, exhausted or not. And we have to keep our bodies active.

Suffering fatigue is really difficult, as you can look like you’re fine, but the reality is obviously far from how it looks on the outside. Just being able to be honest and to say no are the best pieces of advice I can give. When things are difficult, always know that that will pass, and enjoy the moments when things are good, as they will always come back around again.

Managing different areas of pain

Visit our My AS, My Life webpage for more detailed advice on managing activities, including: work; home life; studying; and driving.

Find support from other people with axial SpA: Your SpAce meetups

Connect with others by attending one of our free online meetups. They’re relaxed and friendly. An opportunity to meet other people with axial SpA, get support and share experiences.

Upcoming meetups:

You can view all upcoming meetups and book your place.

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