Building a Toolkit for Axial Spondyloarthritis

What tools do you use to keep the symptoms of AS at bay?

When you were diagnosed you were probably given two strategies for managing your condition; Medication and Movement. 

These two approaches are current best practice for the medical treatment of AS. They are the fundamental tools in a self-management plan, even though how they are applied might look different from one person to the next. 

For many people with AS, these strategies don’t succeed. 

Medication and movement aren’t always enough to return you to a fully functional life that isn’t dominated by pain. 

Online forums are filled with people whose lives are seriously limited by AS. Many of these are following their doctors recommendations yet the inflammation and pain persists. 

It can be a frustrating and frightening place to find yourself. Unfortunately there’s also a culture within the AS world of rejecting outright anything the medical community hasn’t endorsed. 

Traditionally, rheumatologists have dismissed lifestyle changes such as diet, mindset, or complimentary therapies. But the tide is turning as more and more progressive doctors acknowledge the value of lifestyle change and the links between our daily habits and our outcomes with AS. 

It’s a position many AS sufferers are shifting to as well, with a growing awareness there is so much more we can do to improve our own outcomes. 

How lifestyle change impacted my symptoms

Pain drove me to look outside the conventional medical model. I was depressed, sleep deprived and just so done with hurting that I was willing to try just about everything. 

It set me off on a course of discovery that changed my thinking about my health and AS and ultimately gave me back my life. 

Today I’m ten years down the road and in great health in spite of my diagnosis. 

After lots of trial and error, I’ve ended up with a tool kit that allows me to successfully manage my symptoms and remain largely pain-free. My daily habits are focussed on supporting my health and minimising inflammation. It’s a commitment that involves some sacrifice, but it gives me back a life no longer dominated by disease. It’s a reward I wouldn’t trade for anything.

Many of the things I’ve changed in my lifestyle are not things a rheumatologist would likely promote, but that doesn’t mean they aren’t viable strategies. 

A lot of tools like stress management, diet, meditation and supplementation do have science behind them, but they’re not a one-size fits all. Some safe self-experimentation is required, and it takes time to figure out what works and what doesn’t. 

This is one of the reasons doctors are loathe to recommend lifestyle change to patients; there simply isn’t a prescriptive solution for everyone.

How to formulate your own self-management plan

If you’re not getting relief from your symptoms, it might be time to look outside the box and add to your own toolkit. Here’s a brief guide to getting started. 

  1. Begin with the basics. This includes your medical treatment plan, regular movement, stress management, a healthy diet and adequate hydration. These are the broad-brush strategies commonly acknowledged in managing Axial Spondyloarthritis so its essential you’ve got these covered.
  2. Start fine tuning. Once the foundational habits are in place it’s time to look a little deeper and see what needs a tweak. For example, if you’re not getting sleep then it’s time to revisit your doctor to discuss your pain relief. Can’t exercise without significant pain or injury? Time to seek out different, more supportive ways to move your body, such as hydrotherapy or yoga. Getting a full nutritional panel done is a great way to see how your diet is supporting your general health, or to identify issues with gut health, absorption, deficiencies or intolerances. If you’re struggling with stress or depression then it might be wise to enlist the support of a therapist familiar with pain and chronic illness. Many AS sufferers find chronic stress and unresolved trauma are major triggers for their pain.
  3. Get curious. Find out what other people are doing to manage their symptoms, whether in relation to AS or other chronic illness. Read books. Follow reputable health experts who talk about positive lifestyle change. Learn to listen to your body and see what symptoms are telling you. Explore new ideas, and safely experiment. Be open to learning what might help and how you can implement a new approach. If you think you’ve tried everything, you haven’t. Keep looking. Listen to your body and keep striving to give it the support it needs.
  4. Refine your tool-kit. Over time it’s possible to determine what works well and what isn’t for you. Take note of what reduces or increases your inflammation. Notice how well your medication is performing and what your quality of life looks like. Sometimes major lifestyle can create an unhealthy amount of stress and become unsustainable; be aware of this possibility and pull back when needed. Look for the daily habits that feel right for you, and that build up over time to really support your health. These are the tools you will keep in your kit, while others will be discarded along the way as you learn what serves you best in staying well.

Lifestyle change is a gift that keeps giving

Axial Spondyloarthritis is for life, but it is possible to dramatically reduce its impact. 

Putting together your own customised self-management tool kit is an empowering way to take back control of your life and put an end to debilitating pain. 

While I’ll always be thankful for modern medicine, the true beauty of lifestyle change is in its side effects. Any positive habits you take up to reduce your AS symptoms will in turn improve your general health. I truly believe I am healthier, happier and in better shape now than I would have been without that diagnosis a decade ago.

Change can be hard. I offer self-management support for people navigating life with an Axial Spondyloarthritis diagnosis. For more information or to arrange a free introductory consult from anywhere in the world just contact me via the form below.