I was diagnosed with a condition called Ankylosing Spondylitis, also known as Bechterew's Disease, in 2013 after suffering extreme lower back pain - especially in my right SI joint. My MRI showed bone marrow edema in my sacroiliac joints, and I also tested positive for the HLA-B27 gene, both of which are indicators for AS. I was in so much pain I couldn't walk, couldn't sleep, and I couldn't exercise apart from some very gentle moves done on my back as to not move or irritate my SI joints. I was MISERABLE! I was only 29 at the time and my body felt like 90.
Fast forward to now and I'm living in remission, I've become a yoga teacher, I move my body every single day, I'm more flexible than I've ever been (check out my backbend progress below) and I'm learning how to balance on my hands!
I would have NEVER thought this was possible back in 2013, but here I am! So I wanted to share some of my best tips for living with Ankylosing Spondylitis:
KEEP MOVING! This one is number one for a reason, its really really important. Even though its uncomfortable and might feel hopeless at times, it WILL get better! In our case, living with AS, nothing holds more true than the good ol' wisdom of Newton: a body in motion stays in motion! Whether its yoga, pilates, barre, or maybe even running or CrossFit, find something that feels good for YOU and keep doing it. Listen to your body and rest when you need to, but make moving your body a daily habit. If you do something more vigorous I'd recommend adding in daily stretches as well, you can do them in front of the TV in the evening or during a conference call if you're strapped for time - it doesnt have to take more than 10 minutes a day.
Practice mindfulness. You dont have to sit in meditation for 30 minutes a day for this to be effective, just a couple of minutes of mindfulness throughout your day can really make a difference. There are various reasons why this is important but the two biggest ones are: A) inflammation in the body has been directly linked to stress in multiple scientific studies, and B) if we can help our brain and nervous system relax, we can ease pain and also increase our flexibility over time (along with flexibility work of course). You can take a yoga class, or try a guided meditation (I have a few guided meditations specifically for back pain in The Studio - check them out here: Meditations). You can also practice on your own by simply paying attention to whatever you're doing, for example:
if you're out walking: pay attention to your feet and how they move with each step, focus on each of the toes and how they support you as you walk, notice how your clothes move across your skin, and so on.
if you're washing dishes, notice the temperature of the waster, how the dish soap smells, focus on the movement of the sponge as you clean, etc.
Pay attention to what you eat. I personally dont seem to have a lot of issues with what I eat but I also tend to eat lots of anti-inflammatory foods already such as vegetables, healthy fats, and whole grains. I know some AS patients cant tolerate gluten, others have problems with all carbs, some with sugar, etc. So try it for yourself and see if certain foods make you feel better or worse.
Dont be afraid of biologics. Whatever medications you've been offered, try them out and see if they help. If they do - great! if they dont, you dont have to take them. For me personally I get by with anti-inflammatories and heavier pain meds as needed. I've been on biologics twice and it was Humira both times. I've only taken it when I was in such bad shape that I could hardly function. My rheumatologist recommended I'd get on it, let it do its thing for a few months, and then stop it again. I know some rheumatologists recommend patients to stay on it for life, so I'll leave that up to you and your doctor to decide. But dont be afraid of the medications, they're designed to help us. Powering through excruciating pain doesn't help your body, it just causes even more stress.
Buy a foam roller, heating pad, and a massage gun! This is my last tip and its just some of the tools that are really helpful to me on a daily basis! I used to get weekly massages but that got a little too expensive and time consuming after a while so I invested in my own little massage arsenal instead! With a foam roller, a heating pad and a massage gun, you can help yourself feel better on the daily. We have the Theragun which is quite pricey but its worth every penny. There are other ones that aren't as expensive so check the reviews and get one that works for your budget. They're life savers! If you dont know how to foam roll, I have lots of foam rolling and trigger point classes in The Studio, here is one of my favorites: 37 Minute Full Body Foam Rolling
I hope you found these tips helpful. If you have any questions at all you can email me at firstname.lastname@example.org or send me a DM on Instagram @elinafromsweden (although I might be slower to respond there due to volume). You're not alone in this and there is a life after the diagnosis, I promise! Keep loving your body and take care of it the best you can. If you're looking for exercises or yoga classes specifically for back pain, I have a whole category in The Studio. I'd love for you to come practice with me! I film classes on request for my students so if you have a certain area you want to work on, just let me know and I'll film it for you.
Again, you're not alone and there is hope! Sending you all the love and healing. We got this!