Managing Life With Axial Spondyloarthritis

When it comes to life lessons, it would seem I prefer to learn them the hard way! This was certainly the case when I decided to try lifestyle strategies to reduce the impact of axial spondyloarthritis. If I could time travel back I would have some great advice for my former self, but of course that isn’t how it works. Thankfully, through much trial and error, my mistakes have left me with important insights into what works best. They are perspectives I now lean into when helping other people with AS in my role as a Health Coach. [forumDriver id=18304] The all or nothing approach When I began trying lifestyle strategies I took the “all or nothing approach.” Having had a disappointing experience with medication and doctors early on, I decided the conventional medical route wasn’t for me. I thought it was a choice between one or the other. And so I left behind medication in favor of strict dietary change. This was a really difficult path to choose. It involved putting up with a level of pain which in hindsight wasn’t helpful or healthy. In fact, trying to tough it out just made my life miserable. At the same time, the dietary protocols I was experimenting with were really hard on my physical and mental health. They left me feeling isolated, depleted and weak. I did experience some positive results with my symptoms but the changes to my life were unsustainable. Finding balance In time I learned I didn’t need to put my body through so much stress and hardship in order to regain my health. The more I focussed on a balanced, whole-person approach, the less I needed to obsess about food, and the better I felt. These days I incorporate the best of both worlds in how I manage my condition, using lifestyle strategies hand in hand with my doctor’s recommendations. For me this means doing everything possible to support my general health, from diet to movement to stress management to supplements, alongside medication as needed. I regularly interact with my rheumatologist and make sure any progression is kept in check and medication prescribed as needed. It’s been such a relief to realize I don’t need to stay in pain. And I do so much better at keeping all the balls in the air for my health when my pain is under control. Slow and steady Another lesson I’ve learned about lifestyle change is it doesn’t all have to happen at once. I was pretty gung-ho in the past and I would throw myself in at the deep end of whatever strategy I was trying. I wanted to start exercising more as I’d become quite sedentary, so I pushed myself to start with daily 5km walks as well as attending regular yoga classes at the local community center. These efforts ended in frustration and injury, setting me back and leaving me feeling worse. Looking back now I was setting my expectations far too high and increasing the likelihood of failure. The psychology of behavior change shows the most effective changes are those that accumulate as small steps over time. Starting small is the key to building life long habits; another lesson I’ve had to learn. [poll nexus_id=18305] Thinking broadly Finally, one of the most helpful things I’ve discovered over time is to look for answers beyond the specific diagnosis of AS. I used to confine myself to lifestyle strategies that had worked for other people with AS, thinking that anything outside of that was unlikely to make a difference. As it’s turned out, many of the strategies I’ve found to be really beneficial to me are those recommended to anyone wishing to prevent or reduce chronic illness. Things such as healing my gut, managing stress, working on my sleep and so on have helped my general health which has in turn greatly reduced my symptoms. Plenty of hiccups along the way but here I am, finally finding a balanced way to manage AS that is working well for me. [lead_gen showIfLoggedIn="0" campaign="shortcode" source="site"] There was a time when the changing seasons used to bring me joy, but now it seems to give me joint pain mostly. I used to think it was "all in my head," but research says otherwise. According to Schultz et al. (2020), some people experience moderate pain due to weather changes.1 The pain is likely far from moderate for people with ankylosing apondylitis (AS), who already experience persistent joint pain and stiffness. As a result, this can make it difficult for people with AS to perform daily activities, significantly impacting their quality of life. Let's talk more about that From fatigue to decreased mobility, AS can make it increasingly difficult to participate in social and recreational activities. Not being able to engage in the activities you want to can lead to frustration, anxiety, and even depression if the symptoms are severe or difficult to manage. While we often talk about how AS impacts physical health, we sometimes overlook its effects on our mental health. When you cannot attend events due to fatigue or engage in activities because of decreased mobility, it can impact how you see yourself. The mental impacts can make living with AS increasingly difficult. [forumDriver id=18310] Yes, being angry about that is perfectly normal Even though I like to think of myself as pretty positive, I never want to act as if we need just to be grateful. It's human to experience all the waves of emotions. The joy when you wake up without pain and the anger when you do. The excitement when you can move freely and the frustration when you're not. What I've learned through my journey with managing my pain is understanding there will be times when things don't go as planned. Those are the times I allow myself to slow down, rest, and say no because no is a complete sentence that requires zero explanation. More importantly, saying no to what doesn't work for you allows you to start saying yes to what does For now, saying yes for me has resulted in better pain management techniques. In doing so, I've improved my symptoms and maintained a more fulfilling life. While medications and physical therapy can effectively manage pain and inflammation, natural techniques can also be used with conventional treatments to provide additional relief. Here are a few techniques that have worked for me: Yoga: Yoga can help improve flexibility, reduce stress, and promote relaxation, all of which can help manage pain and improve overall well-being. Meditation: Meditation can also help reduce stress, which can help reduce inflammation and alleviate pain. Heat or cold therapy: Applying heat or cold therapy to the affected joints can provide relief. Massage therapy: Massages are a great way to relieve tension and improve circulation. Speaking with your healthcare provider before trying new natural techniques is always essential. By incorporating natural techniques into a comprehensive treatment plan, people with AS can improve their pain management and overall quality of life. [poll nexus_id=15474] Despite the challenges, we can overcome the obstacles Living with AS can be challenging, but with proper management and treatment, people with AS can lead full lives. Whether it's a persistent pain in your lower back or stiffness in your hips, I hope the techniques I share can provide temporary relief as the season changes. And your healthcare provider can assist with making sure that seasonal changes don't keep you down yearlong. [lead_gen showIfLoggedIn="0" campaign="shortcode" source="site"],Broken sleep and nighttime pain are challenging aspects of living with AS. Over time I’ve developed some strategies that help me manage when these symptoms crop up. It’s usually the first sign my inflammation is spiking again when I get that tell-tale stirring around 3am. I toss and turn in my sleep and eventually wake fully from the pain in my lower back and legs. Disturbed sleep used to upset me a lot I’d feel panicked about how I would manage the following day after a bad night. There would be frustration and resentment, along with the fear I was entering another cycle of worsening pain. I guess the upside of having the same thing happen repeatedly is you eventually learn some coping strategies. That’s certainly been the case for me with interrupted sleep. Its been happening for so many years now that I switch into auto-pilot and know what I need to do. [forumDriver id=14673] Learning acceptance rather than worry Probably the biggest difference these days is I no longer catastrophize. Thoughts always feel heavier in the dark, and I would instantly go from zero to worst-case scenario. Now I try to remind myself that I have AS, and this is just part of it. Yes, I’ll be grumpy and less capable the next day, but the world won’t end because I’m tired. (I wrote about how I manage on a tired day here). Its easy to over-analyse your pain at night. Sometimes I can identify what’s caused my pain. Often I've lifted something heavy, or neglected my daily stretches. Inflammation spikes if I’m stressing over something or straying too far from the diet that works for me. But sometimes the pain just comes back for no reason, and that’s part of AS too. I no longer lie in bed obsessing over what went wrong. There are a number of other things I try when I wake with pain The first is a mind-control exercise I would never have believed possible until I experienced it. I came across a pain-relief meditation a while back. It involved focussing on the location of your pain then consciously reassuring your body it was safe and could relax. I was very cynical but gave it a go. After I practiced this several times I found it did actually help. Now I will often spend just a couple of minutes thinking these thoughts and my pain will dramatically reduce. I know this sounds far too simple to be true, but I’m constantly surprised by how effective it can be! I know my pain is real, but I also believe pain and fear are closely linked in our brain and we do have a level of control over what our body perceives. If the pain persists, I’ll try some simple stretches while I’m lying in bed. Stretching my ultra-tight hamstrings will often release some tension and ease the pain in my legs, buttocks and lower back. If I still can’t get to sleep after about 45 minutes I know it’s time to get up and move. I try to keep myself warm during this time, so I rug up and put slippers on before doing more stretches and walking some laps of the house. While I’m up I might top up with some over the counter pain relief or rub magnesium cream into my lower back. I’ll apply a heat pack and drink a hot cup of tea. If all else fails I’ll try a hot shower. I keep an eye on the clock and try to get back to bed before 90 minutes have passed since waking. This is the average sleep cycle most people operate under and gives me the best chance of getting a few more hours before morning. Most of the time these strategies work. Sometimes they don’t, and unfortunately that’s life with AS. What have you found helpful in navigating nighttime pain? [poll nexus_id=18308] I have dreams, though they may sound simple. I have dreams of laying in a vibrant field of grass with the warmth of the sun beaming onto my face. I have dreams of walking to the store without writing the list of the things I need or reading it over and over in the back of my mind so that I don’t forget. I have dreams of seeing the world with a steady vision—without the static or blur filtering over everything I see. I have dreams of living a life in which I feel truly alive. You can’t see how desperately I want to go back to sleep, even though I know no amount of sleep could ever make me feel rested—-but I get up anyway and try to make the best of my day. Even if that means simply just getting up to shower, or even just survive the day. You can’t see how hard I struggle just to get more than a bite of my breakfast in the morning. Nobody sees that more than half the time I have to take a pill to successfully eat a full meal. [forumStarter id=18309] You can’t see how my legs shake as I try to go up or down a set of stairs. Or how my hands consistently tremor, making it impossible to do many things without struggling. You can’t see the way I rely on my bed or whatever is closest to me to help me get dressed every day. You can’t feel the tightness in my chest or knees, or the fire blazing down my spine. You can’t see through the distorted lens of my own blurry vision You don’t know how many times I’ve watched the clock’s pendulum sway back and forth while I remain feeling numb and empty laying on my couch—how it taunts me and reminds me that life will continue to move on without me. You don’t know the way I struggle to string together my own thoughts into words in simple conversation. Or the frustration of having my own brain fail me so frequently. You can’t feel the full-body hangovers after doing something that I knew would push me too far-—because I had no choice. You don’t know how I constantly feel like I’m rotting from the inside out, like there is poison spewing out of my organs. You don’t know how sometimes in the back of my mind, I wonder if this is what it feels like before you die. How I wonder if I’m even going to make it to grow old with my fiancé. You don’t know how most days I wake up with nothing to look forward to You don’t know how I experience anxiety every day from the idea that others are judging every choice that I make. These are the truths of a chronically ill individual. For those of you who struggle with illness, know that the people who judge you have never been put in a position where they have to do whatever it takes just to survive every day. I may be sick but I still have dreams—-dreams that I am actively working toward at my own pace, because I have no choice. They may seem small, or maybe it may seem like I’m not trying that hard, but maybe that’s just because you’re not looking close enough. [lead_gen showIfLoggedIn="0" campaign="shortcode" source="site"] ,I’ve been on biologics now for two and a half years. Before biologics, I was desperate for relief from the pain my AS was causing. I was taking the maximum daily dose of non-steroidal anti-inflammatory drugs. I hadn’t slept through the night properly for a couple of years. I’d wake up in the night because of stabbing pain and stiffness along my pelvis and spine. My ribs would hurt so much when I was breathing in that I couldn’t focus on what someone was saying to me or hold a conversation. Sometimes, I would run a hot bath in the early hours of the morning to help cope with the pain. I was dragging myself through the day, just hoping for sleep that night. I was run down and exhausted. When my rheumatologist brought up using biologics to treat my AS, I was eager to try them. At that point I was willing to give anything a try. Starting biologics Soon after deciding to try biologics, I had two nurse visits to my home to go over my prescription and teach me how to inject my biologic. The nurse told me that it could take up to 12 weeks for me to notice a difference, so not to panic if I didn’t feel better straight away. My symptoms didn’t reduce instantly, and there was no sudden moment when I felt the biologics start to work. Slowly but surely though, my symptoms started to ease. I started sleeping through the night. This meant I felt less stressed, and better rested and able to mentally deal with the symptoms that remained. Injecting biologics I’ve been on my biologic for two and a half years, but I don’t inject it myself. I used to really dislike needles and get very anxious and stressed about blood tests. I’ve made a lot of progress in being more comfortable with injections, but not to the point where I feel able to self-inject. I also find the injection itself quite painful and worry that I’d pull out the needle as a reflex reaction to the pain. Some things which I’ve found have helped me cope with the injections are focusing on my breath and scrolling social media or watching a video on my phone as a distraction. I also choose an injection spot on my stomach rather than my thigh because I find injections in my stomach less painful. Medication anxiety My rheumatologist informed me about the risks of potential side effects from biologics when I was making the decision about whether to take them. I’ve found that since telling people I’m taking biologics, they sometimes ask me if I’m scared of the impacts it could have on my body in the long term. I was so desperate for something to help with my AS, that I hadn’t given this much thought. I’ve reflected on it, and I think that on balance, I’m glad I haven’t dwelled on the risks too much. Right now, biologics are allowing me to live my life, rest and do the things I want to do. That’s what’s important to me. I’ve also found that people can have the attitude that taking no medication is the best way to live and that they are pushing this attitude onto my life and situation. But taking a medication that helps me so much is nothing to feel guilt or shame about. If there comes a time where I get side effects or biologics aren’t working for me anymore, then I’ll deal with that when it happens. I don’t want to let medication anxiety take up too much of my headspace. Reflecting on my biologics decision I’m grateful to have access to biologics and that the first one I tried has worked so well for managing my AS. My symptoms haven’t completely disappeared, but it feels like the volume of my symptoms has been turned down. I hope that over time this means that any physical progression of my AS has also been slowed or prevented. I’m glad I decided to try biologics. Have you tried biologics for your AS, or are you considering it? If you have, how was your experience?

Managing Life With Axial Spondyloarthritis

Finding Balance in Managing My AS

Managing Seasonal Joint Pain for a More Fulfilling Life

Awake in the Dark: Navigating Nighttime Pain With Axial Spondyloarthritis

The Truths of a Chronically Ill Individual

My Experience With Taking Biologics for AS

5 Tips for Starting a Self-Injection Biologic

Symptoms of AS Your Doctor Probably Doesn’t Talk About

My Experience With Biologics

Why I Had to Switch Biologics

My Decision to Stick With a Biologic, and How It’s Helped