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. 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. [forumDriver id=14645] 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. 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=15475] 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"],Being chronically ill means that doctor’s appointments are routine and frequent. It also likely means you have several different types of doctors you see. Finding and building a care team can sometimes feel like assembling the avengers. You have to find the specialists that are in your insurance plan, have accessible offices, flexible hours, and are accepting new patients. It’s an added bonus if you like them and can work with them well. If your doctor leaves the practice or your insurance changes, the process starts over. My doctors I routinely see my primary care physician, a rheumatologist, gastroenterologist, orthopedic spine specialist, osteopathic orthopedic doctor, and a therapist. I include a therapist here because dealing with chronic pain and fatigue is something that can be made easier with proper mental health care. My ophthalmologist and dentist are not listed here because I only see them as part of my annual healthcare. AxSpA can cause uveitis, so regular eye exams are important to maintain. If you develop uveitis, having an ophthalmologist you visit regularly will be crucial. The types of doctors and the frequency in which you visit them will vary with the severity of your AxSpA. A rheumatologist is an essential piece of the puzzle because their specialty is in autoimmune conditions like AxSpA. Primary care physicians can help manage general health concerns and treat short term illnesses. Different primary care physicians may have knowledge of AxSpA and suggestions for treatment options in addition to your rheumatologist. For example, my primary care physician suggested certain anti-inflammatory medicines to use in conjunction with biologics suggested by my rheumatologist. Injuries, surgeries, and AxSpa AxSpA can come with or cause spinal injuries and joint injuries. Orthopedic doctors focused on the spine and other joints can help treat these injuries and may suggest surgery if necessary. They can also provide smaller procedures that help with the pain caused by AxSpA. Trigger point injections and steroid injections (usually epidural steroid injections) can help to relieve pain brought on by AxSpA. There are plenty of other options that orthopedic doctors have solutions and treatment options for. If other symptoms of AxSpA, like gastrointestinal problems or psoriasis, become an issue, doctors focused on those areas specifically can be very helpful. If these symptoms are milder, the primary care physician can help out. A therapist can also be extremely helpful for managing the frustration from living with chronic pain. There are therapists who specialize in helping those with chronic pain, but just having someone to talk to makes a big difference. Communication Once you have a good collection of doctors, it is important to communicate each of their treatments to your other doctors. Thankfully most healthcare systems have technology that allows your medical chart to be accessed by other doctors in the system. Otherwise, it is important to keep your medical and pharmacological records updated. Your healthcare team is there to support you and create the best treatment plan possible. Finding the right doctors may take some time, but it is important to have healthcare providers you feel comfortable with. [lead_gen showIfLoggedIn="0" campaign="shortcode" source="site"] Getting diagnosed with AS really young left me growing up not being fully aware of what it meant to live a life of autoimmunity. At that age, most of what I heard medically went in one ear and out the other. My mother dealt with all of the medical knowledge and, well, as I got older I never really asked much about my illness. All I knew was that it caused me pain and I was medicated for it. Nobody ever warned me that there was more to my diagnosis than just arthritis. I wish someone told me how fragile my body would be I knew that living with this would mean my immune system wouldn’t be as good as the average person, but nobody told me just how fragile my health could actually be. I knew I could expect to pick up colds more easily, but not that I could be more prone to infections or more serious health concerns. I only learned over the last two years just how important it is to take care of my body as a whole and not just keep my AS in check. [forumDriver id=13590] I wish someone told me how it would impact my mental health After experiencing many setbacks and additional health issues, which can come with living with an autoimmune condition, my mental health has most definitely taken a hit. I personally feel that when someone is diagnosed with a chronic condition, not only should they be set up with their specialist but a mental health expert as well. It can be so traumatic and lonely, and most people who do have an autoimmunity struggle with depression and anxiety. We shouldn’t have to be left out on our own to cope. We should have resources given to us to help us through, especially after diagnosis. I wish someone told me what it meant to live with one as a woman Nobody tells you how living with an autoimmune disease can affect your body as a woman. Many women feel too embarrassed to speak openly about their vaginal health. When I first got prescribed Humira, I was getting yeast infections left and right. I felt so ashamed and embarrassed. It also made me feel gross and insecure. It wasn’t until I made my Instagram account last year and found a community of incredible women who were openly discussing how they too have gotten chronic yeast infections. It made me feel so much better knowing, in the world of autoimmunity, that this wasn’t a topic people felt too embarrassed to speak about. Which leads me to my final point. Nobody told me that I would connect with so many others who feel the same Through all of this hardship I’ve found not only friendship through the community, but also so many others who have gone through such similar situations. It makes me feel less alone in this journey. So despite my health circumstances being less than ideal, I have a whole community of people in my corner who are here to cheer me on. And I hope you know that I want to be that person for you, too. [lead_gen showIfLoggedIn="0" campaign="shortcode" source="site"] ,Switching meds. No big deal right?! This one in particular wasn’t successful but not to worry, there are so many biologics on the market to try. Something as simple as a med change can be really tricky for those living with AxSpa. Let’s dig into why! The medication rose colored glasses In the past when I had some success with medication, all other aspects fell into place. I feel better physically so I can enjoy time with friends again, I can take time to prepare healthy meals, I can incorporate daily activities that keep me feeling good! Then when things level out and it is clear this isn’t the right medication for me, and then all the stability that came along comes crashing down, and it can be hard to not take it on as a personal defeat. [poll nexus_id=13428] The wash out period Depending on each medication, some biologics used to treat AxSpa require a “wash out “ period. This means you need to wait a set amount of time for that current medication to be completely out of your system to try another. For me this usually means I end up in a flare from having a period of time with no treatment, and it can be a difficult period to have to wait to feel better! Insurance and approvals Now this next one is the worst. The insurance and understanding of a new medication company. It’s tiresome to have to get a new support team, fill out new forms, wait to be approved by the insurance, which is something that happens when you try new medications. They are such a great resource to have, but when you're feeling discouraged and fatigued paperwork is the last thing we want to do. Thinking about my other conditions This last one may not apply to everyone who has had to change biologics, but for me personally, when my last medication failed to work for me, my doctor and I discussed my other potential conditions and symptoms, Crohns being one of them, and was careful in choosing one that we would treat that also (as some biologics don’t treat IBD). So there you have it, the reason changing meds for those with AxSpa can be difficult! What’s your experience been like changing meds? [lead_gen showIfLoggedIn="0" campaign="shortcode" source="site"]

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Finding Balance in Managing My AS

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Building a Care Team

Things I Wish I Was Told When Getting Diagnosed with AS

Community Poll

Switching Biologics With AxSpa

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Finding a Good Rheumatologist

My Experience With Biologics

Why I Had to Switch Biologics

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