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How do you cope with fatigue from AxSpA?

Living with axial spondyloarthritis can bring chronic and unpredictable pain and flares. Many in the community share struggling with constant fatigue brought on by AxSpA. Let's have a conversation about coping with fatigue–consider some of the following questions:

  • Does does your fatigue change from day-to-day?

  • What helps you feel better when experiencing fatigue?

  • Are there certain activities or hobbies that you do more on days with fatigue?

  • What do you enjoy or are able to do on days when fatigue is low?

  1. Hello everyone,

    Yes well big topic there! Certainly I live with fatigue and this does impact on my level of pain and my mood. Sometimes I would wake up after a 'good' night sleep, feeling tired even before I have started the day...

    Now it does not happen as much as it used to. So I may have found a way to manage it that works for me.
    First, if I wake up feeling fatigued, I don't get obsessed about the idea anymore. I get up and get on with my morning routine, at my pace. Some mind distraction or practice like mindfulness really helps me to stay focus and positive at the start of the day.
    Then eating well is key! On days I am tired I am tempted not too cook and have more sugary / fatty meals easy to prepare. That's not helping with the level of fatigue. Plenty of fruit and veg, and light meals, even healthy snacks during the day do me a favor. Yes I tend to eat more on those days so I am looking at what I am eating to get more energy.
    No matter how tired I am, I definitively go out for walk, even a short one (minimum 30 minutes) to get fresh air and change my perspective during the day. Like Rebecca, I might do the gentle stretches or follow a short yoga session online. I find particularly breathing exercises can give me back some energy that I thought I did not have.

    Finally, because I accept that I am tired on that day and I want to function while dealing with the fatigue, I might take a nap in the afternoon and I don't feel guilty about it. I just put an alarm so I don't sleep for too long.
    Interestingly, I have had one of these days recently, and by looking after myself carefully, the fatigue did not last the whole day.

    Overall, what has helped me the most with managing my fatigue is pacing myself. I did the classic 'boom and bust' cycle so many times so now I have learnt my lesson. Therefore, whilst I can say that I do more activities on days I am fine (walking, cycling, swimming), actually now the difference in my level of activity between good days and bad days for fatigue is not as big as it used to. I try to stay active and stick to my plans with some room to adapt my day if needed.

    1. This is such an interesting post, Julie! For one, the idea that I get caught up in my head ("Oh no I have fatigue today, what will I do? How will I get through this") is so real. I love what you said about just getting on with it and not pathologizing it, obsessing on it — and just going at my own pace. Since we have to live with it, we may as well just treat it like a normal thing. Also, the boom and bust problem is such an issue for me. I will BOOM until I drop dead, essentially, and I am now JUST learning, after years, that I must pace myself and be thoughtful about my enegy. Thank you for the excellent and necessary reminder. I hope you're doing ok!

    2. Thank you for your comment Lisa! I am glad that my post is useful.
      I am doing well thank you. I seem to feel better now, with more energy again. I usually take vitamins during Autumn and Winter, and that seems to work!
      There has been some interesting discussion between this site and Fb AxSpa about fatigue. What a fascinating topic! We constantly learn about it. I am sure you will find your own formula to manage your fatigue very soon! Take care 😀

  2. Hey there everyone! My fatigue is like a rollercoaster and my life is hard to gauge. Some days I can wake up feeling refreshed and some I cannot lift my head off the pillow. The fatigue is like a little green monster waiting in the shadows to attack, especially when I have to work or have made plans. I deal with the "brick wall" of fatigue with drops of Focus Elixer by Canna Hemp - CBD drops - under my tongue. I also ramp up on the caffeine to give me a little boost when I am dragging. Also, by getting up and stretching and doing 20 mins of low impact exercise I give myself a boost of energy to help me through the workday. I walk, ride my stationary bike, or practice yoga.

    1. Rebecca — it really is. Somedays, it's like you have the energy of 10million suns and then somedays you're POSITIVE you will never, can never, can't imagine ever having energy ever again. Just walking to the couch feels daunting. It's true that it feels like a monster. I have also been using CBD and it's been helping with sleep (which helps with exhaustion). I find that movement daily, even when I feel awful, helps acclimate my body to a consistent level of movement and mobility. On your worst days, what movement do you go for?

    2. Lisa - I really need to do low impact exercise and my stationary bike is excellent for that. I have had a Left hip replaced and a left total ankle replacement twice (going for my third soon - implant came loose) so I am unable to walk long distances and running is definitely out. I use a yoga/stretching program that is awesome. Scroll to the bottom and there is a plan you can download. Also, I really like the site Creaky Joints - Best of luck and happy holiday season! Rebecca

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