#8 How to manage Ankylosing spondylitis

Aside from medications, how can we manage AS, especially during a flare up? A general overview.

After last week’s flare up, I thought it would be a good idea to discuss what I do to help manage my symptoms. However, it’s not just during a flare up I do these things, I try and practice these every day to prevent a flare up in the first place. Although, as I’m discovering, sometimes you can do everything you can think of but flare ups still happen. In these times, it’s important not to blame yourself or think that you’re not doing enough to help yourself. It's not your fault you're ill. Speaking to yourself with kindness and understanding in these times is essential.

I have listed a few things below which I have come to find useful over the years. You probably do a lot of these already, but you may find something that you hadn’t thought of before or need a gentle reminder to do. Of course it’s difficult to do ALL of these things at once. If you’re anything like me, I can have the best intentions in the world, but sometimes life just gets in the way. I also find it difficult to look after myself when the fatigue is bad and that’s when I become very selective in what I do. I’ve become to think of these practices more like a tool box of things. To take out different ‘tools’ on different days when I need them.

Obviously there is so much to write about with AS and each of these tools, but for now I’m just doing a general overview, but I’m hoping to go into more detail on each of these things in future blogs, so watch this space!

Tools to help manage AS:

Movement/Rest balance

Whenever I look online for tips and tricks on how to manage AS, exercise always comes up first (after medication). However, I’ve put movement instead of exercise because I think it sounds more manageable. On a day where I’ve got high fatigue or pain, even the word exercise can feel quite off putting to me. But if I tell myself just to move, in any way that feels right for me on that day, it sounds more inviting. Maybe that’s just me?

The NASS charity website says that it’s important to find an exercise that you enjoy so that you keep up with it over the long term by doing it regularly and consistently. So it’s of course a very individual choice and varies immensely in what movement you decide to undertake.

I’ve always enjoyed hiking, yoga and at home work outs, so that is what I’ve been focusing on recently, but to a way lesser intensity than what I used to so I can do it regularly without causing myself a flare up (still working on it). A lot of people have recommended swimming to me, as that takes the pressure off the joints, so I’m hoping to incorporate that in the near future.

But of course there is always a balance to be had between movement and rest. I’m really trying to listen to my body and what it needs, but it’s so hard to know how much movement and exercise I can do without making myself too fatigued. The difficult thing is that the effects of overdoing it can occur hours or days after the event. So how do you know for sure?

Physiotherapy

If you were anything like me when you were first diagnosed, I was very overwhelmed. My Rheumatologist told me I needed to exercise every day or I would stiffen up, but didn’t actually give me any tips on how I was supposed to do this. In the end I made a self-referral to my local NHS Physiotherapist to get some help. She did tell me the hospital was supposed to do this for me, but no one did, so it’s worth chasing it up with your team if they haven’t mentioned physiotherapy to you!

I was on the waiting list for a long time so it’s only recently that I’ve had any physiotherapy sessions. It felt like such a relief to talk to someone who knew exactly what AS was. I had so many questions and she was so reassuring and understanding. Physiotherapists can help you make an individualised exercise program that suits you, show you exactly how to carry out those movements safely, suggest certain equipment, and refer you to local exercise programs e.g. swimming groups, or chronic pain management sessions (depending on what your local area provides).

Good posture

Following on from Physio above, she also reminded me of the importance of good posture. I have a tendency to slouch in my chair because it feels like a workout to me to sit up straight for ages, but she warned me that it’s a bit of a vicious cycle. The less you use your back and core muscles, the weaker you get, so the more pain and stiffness you will get. She put sports tape to my back/shoulders to remind me to stop slouching. That stuff really does work! I also noticed that when I had good posture and sat up straight, I could breathe a lot easier. It sounds obvious now I say it, but when I slouch I shallow breathe, but when I sit up I can take a deep breath right down into my lungs.

Deep breathing exercises

Which leads me onto deep breathing exercises. I get a lot of rib pain with my AS, especially around my breastbone. Each morning I wake up and my whole chest feels super tight. I have to sit on the side of my bed to stretch, but now I am also incorporating deep breathing into that too. The deep belly kind of breathing. It not only helps to calm me, but it helps to expand my chest and makes it easier to breathe for the rest of the day. In my next Physiotherapy session she said she would focus on this aspect a bit more, which I’m actually quite looking forward to as I think it would be super beneficial.

Sleep/sleeping posture

My partner laughs each night as were getting ready for bed because I need to gather a million pillows to make myself comfortable. He calls me the princess and the pea. I have one pillow under my head, any higher and my neck starts to hurt. I put a pillow between my knees to take the pressure off my knee and hip joints. I also have a long sausage type pillow (actually shaped as a sausage dog, it’s so cute) that I hug at the front of my body. I find it takes the pressure off my ribs and breastbone. We have also invested in a memory foam mattress topper, which was expensive (£100-£150), but I cannot express to you how much it has made a difference to the pain in my hips and lower back. I sleep more deeply and restful now, which of course then has a positive effect on fatigue levels the next day.

I’m also quite strict on the amount of sleep I get and try to go to bed at the same time each night. I need about 9 hours of sleep each night to feel human. I know I’m privileged in this regard, because I know this is not always possible if you have kids/long working hours etc. But I find trying to have a good sleep routine is helpful. Such as going to bed at the same time each night, getting up at the same time each morning, switching off screens an hour before bed, gentle stretches and deep breathing exercises before and after sleep, having a dark, cool and quiet bedroom, sleeping in breathable pj’s and sheets e.g. cotton and having a relaxing bath or shower before bed. I slather myself in lavender magnesium body lotion to help relax my muscles. My partner and I also go to bed at the same time each night so we don’t disturb each other. Again, I know this isn’t always possible, but I just wanted to emphasise how important sleep is. Sleep is when our bodies try to heal and recover. We spend one third of our lives asleep! So we should try to be very protective over it and be proactive in trying out different ways to help us sleep.

Heat/cold therapy

As I touched on above, hot showers and baths have been beneficial to me to help relax my muscles, reduce stiffness and pain in my joints, along with heat pads, hot water bottles, cold presses etc. I also use Epsom salts in the bath, essential oils like lavender to help calm me, and also a lavender magnesium body butter.

Although recently I’ve had to limit my time in the bath as this can increase my fatigue levels which is a shame. Does anyone else find that heat, like baths, helps with pain, but increases fatigue?

Diet

Now I don’t mean the lose weight type of dieting, I just mean what food you put in you body. For me, diet has a huge impact on my symptoms. The days where I eat more sugar, fat, salt, caffeine, and drink less water, I feel like absolute garbage. I’m not sure if that’s because it increases inflammation levels in my body, or it’s linked to my IBS/IBD, but I just can’t eat like I used to, which is probably a good thing. It’s taken years of trial and error, food diaries, dietician input and listening to my body to figure out its triggers. For me I can’t seem to tolerate gluten, vegetable oils, alcohol, dairy, or fatty/sugary/processed foods. As soon as I eat them, I can feel my joints start to hurt and my fatigue levels increase. Of course I will still indulge in the odd treat, I am only human and I don’t think I could ever live without snacks, but I do feel the consequences later that day or the next day. Sometimes its worth it, sometimes not.

Most days I try and drink only water or herbal teas, limit myself to one coffee a day, cook from scratch where I can (fatigue levels permitting) and try to get my 30 different plants a week.

I personally still eat meat as I find its one of the few things that doesn’t upset my stomach. Unless it’s fatty meats like sausages. So again, it’s such an individual journey and it’s important to listen to your body and seek professional help where you can. I don’t think it’s wise to cut anything out of your diet ‘cold turkey’, unless you’ve spoken to a dietician/gastro team first (unless of course it’s an allergy!).

Positive self-talk

I find this one of the most difficult things to do for myself, I’m not sure why. I guess depression and anxiety can make this harder to do, which people with AS are more prone to anyway. Since giving up my job and driving, I also feel my self-esteem and confidence has plummeted. Does anyone else get that feeling? When my defences are down with pain and fatigue, I find it difficult to be kind to myself. I blame myself for not being able to do what others can do, I feel a burden on my loved ones and this causes me to go into a downward spiral. I am now working with an NHS therapist who has told me to try and talk to myself like you would a friend. If a friend was ill, you wouldn’t have a go at them and tell them they are weak and pathetic would you? You would tell them to take it easy, look after themselves, rest up, reassure them that those negative feelings won’t last forever and soon things will start to get better. You would be kind, understanding and reassuring. So now when those negatives thoughts start popping up I really try and challenge them. You are just trying your best in a very difficult situation.

Therapy

Therapy in general has also been a really useful tool for me. I often find it hard to open up to close family and friends about how I’m really feeling. I’m worried I will come across too negative or feel like I’m dumping too much on them, which is silly I know because if you asked them, I’m sure they would want to be there for me, but I find it easier to talk to someone more distant from the problem, someone who I know will listen to me and create a safe space for me to talk. I can be honest with them and they can help reframe my negative thoughts into more positive ones.

Pacing

My therapist has also been teaching me about pacing to help with my fatigue. I can’t say that it’s helped a huge amount just yet, as I’ve only had 3 sessions, but it has helped me to understand what fatigue is and how to discuss it with those around me. She has told me to not keep going with activities until I’m at 100% fatigue level, but stop when I’m at 50% instead, then rest, and come back to it later. This is harder than it sounds, but I’m trying. Has anyone else had success with pacing?

Gratitude journal

I’m also trying to keep a gratitude journal. Each night I write down a little something I am grateful for. It can be something big like ‘I’m grateful for the love and support from my husband’ or something small like ‘I’m grateful for a yummy cup of coffee’. This is a good way of keeping things in perspective. It’s easy to look at all the negatives in my life and get overwhelmed by them. I need to make a conscious effort to look for the positives, and when I start looking, there are loads. So when I’m having a bad day, I can flick back through my diary and remind myself of all the good in the world. A little joy boost.

Ask for support & seek connection

As mentioned above, I find it really difficult to ask for support. I’m not sure where this stems from. Is it pride/ego? Low self esteem? Who knows, but I find it a huge challenge to just ask my family and friends for help. A few months ago my husband was away on a work trip and I was alone in the house. I had a bad flare up and could barely walk, I was crawling around, grabbing onto walls trying to get to the loo, feeling super faint, I found it really hard feeding myself. In hindsight, I should have just picked up the phone to family/friends and just asked them for some assistance. Later I spoke with my friends about it and they were horrified that I didn’t call them, of course they would have come over, they want to be there for me. So now I’m trying to be more honest and let myself be vulnerable. Argh why is that so hard. Does anyone else feel the same?

It doesn’t just have to be loved ones you get support from, it’s also important to ask for help from professionals when needed e.g. keeping your Rheumatology team up-to-date with how you’re getting on. Is the medication working? Are you getting more pain? Can you talk to your GP or get a self-referral to NHS therapy if you are having anxiety and depression? Can you get help from Physiotherapists or a personal trainer at the gym to help with an exercise program? Can you ask the Occupational therapist to offer advice about aids and adaptations? Can NASS charity help you with filling out PIP forms? There’s plenty of help out there when you start looking. Many people are more than happy to help if you just simply ask. There’s no shame in it. Humans are social creatures, we’re not meant to do all this alone.

Boundaries

I also need to remember that people aren’t mind readers. It’s not always obvious to those around you what you are going through. It’s not always enough to just expect people to understand and step in. It might seem obvious to you that you’re fatigued and in pain and need some help, but to others you may look like your coping. People might not want to step on your toes or don’t want to assume you’re not doing well. People don’t want to offend. People may be completely oblivious because they have their own stuff they are dealing with. You have to be open, honest and quite clear with your wants, needs and boundaries. This also goes the other way. You need to be clear when you’re not able to do something. You need to protect your energy and your mental health. I also find this very difficult. I’m a people pleaser. I hate to say no to people. I always want to help others (I used to be a Nurse after all), but now I need to remember that I can’t help others when I’m running on empty. I need to let people know what I can and can’t do these days, to manage their expectations. If they are expecting too much from you, tell them. I know this is super hard to do, especially with loved ones. I’m learning every day how to do this, baby steps I guess. Do you find this difficult too? I’m currently reading a book called ‘Set Boundaries, find Peace: A guide to reclaiming yourself’ by Nedra Glover Tawwab. So far it’s been very insightful and easy to read. I like that it has different chapters for different areas in your life such as work, friendships, family etc. Although, it’s one thing reading a book about it, but quite the other putting what I’ve learnt into practice!

Stress management

This links with the above really. How can you lessen the stressors in your life? I know that when I’m stressed my pain, fatigue, inflammation, anxiety, negative self-talk and bowel symptoms all increase. Over the past year I’ve tried to manage or remove each tiny stressor from my life. Some things seemed insignificant on their own, but when I piled them all up it made a huge difference. I’ve also been reading Mo Gawdat & Alice Law’s new book ‘Unstressable: a practical guide to stress-free living’. I have found this helpful in reframing stress and how to cope with it. There is also a good YouTube video where he talks about it here.

Of course you can’t remove all stress from life. Some stress is beneficial and other stress is just a part of life. I’ve been asking myself: With the stress I can’t remove, is there a different way I can react to it? On the days/weeks that I know I will be more stressed, can I put things in place to help myself deal with stress better? For example, a member of our family recently had a health scare and my husband was made redundant in the same week. We knew this was going to be a very stressful time, so we put a plan in place. We made sure we limited our commitments/calendars so we didn’t get burnt out, we ate super healthy so our bodies were less stressed, prioritised rest and sleep, went for nature walks and limited negative social media/the news. I like the Jon Kabat-Zinn quote ‘You can’t stop the waves, but you can learn to surf’. You can’t stop all the stress and challenges that crop up in life, but you can learn to adapt and cope.

Aids and adaptations

Over the course of the year I’ve been trying to adapt my home to help conserve my energy and lessen my pain. I’ve now got a shower/bath board I sit on, as I often get so fatigued and dizzy when I wash/bathe. I have a tall Ikea stool I sit on in the kitchen to help me when I cook dinner. There is something about standing on the spot and the heat from cooking that drains me so quickly. Bending is a huge drain on my energy levels and causes pain in my lower back, so I’ve tried to move things I use often from bottom shelves and cupboards to higher ones. Or remove things from the floor so I don’t need to keep bending and picking stuff up as I hoover the flat.

I have now purchased some walking poles to help stabilise me whilst out walking and I can’t wait to see if they help. I know a lot of people with AS benefit from wheelchairs, walking sticks/canes and walkers. I think companies are starting to wake up to the fact that there are a variety of people that need them. There seems to be more choice now with different designs and colours which is exciting. The Neo-Walk sticks and Cool Crutches look amazing, has anyone tried them?

It has made me very aware of how many places in society just aren’t cut out for people with mobility issues or disabilities. I feel quite saddened sometimes that I was so oblivious to this beforehand, how privileged I was to not have to think about it. I’m glad I’m more awake to this now though. If I ever have the strength to go back into Nursing or the NHS, I will learn from this experience and bring these lessens with me in all my future endeavours.

Have you found any aids that have helped you to carry on with life with less pain?

Distraction

When I’m in pain, distraction has been one of the biggest ways I cope with it. If my mind is distracted with another task it focuses less on the pain. This ranges from day to day and it really could be anything that brings you joy. Could you pick up the phone and talk to a friend? Can you play or cuddle with a pet? Can you read a book or watch TV? Could you do something creative? Go for a nature walk? Cook or eat something yummy? Journal or write? For me there is no better distraction than when I get creative and use my imagination. I can completely get lost in writing and poetry, and before I know it, a few hours have passed and my pain is buzzing away in the background instead of being a constant red hot pain in the forefront of my mind. How do you switch off or get distracted? What brings you joy that helps lessen the pain?

How about you? What’s in your tool box?

Is there anything I have missed off? What things have you found useful in managing your symptoms? What has been the most important tool for you? Have these changed over the years? Also, has anyone had much success with alternative therapies alongside medications, like massage or acupuncture? I would love to know.

Thanks again for reading. Sending you all healing thoughts.

Lots of love & hugs,

Amanda x