The chronic pain of ankylosing spondylitis and axial spondylitis can be all-consuming, debilitating and scary.
For most people with AS, reducing or eliminating pain is priority number one.
My own worst experiences of pain were at night. I would wander around the house in the dark; bent over and crying as quietly as I could. It hurt to lie, stand, sit and move and I was so sleep deprived I felt close to losing my mind.
I would have done just about anything to get out of pain at that point, but I was so lost in the fog and overwhelm that I didn’t know where to begin.
The Dangers of ‘Toughing it Out’
Reducing pain levels by extinguishing the raging fire of inflammation is a crucial first step towards a better life with AS. Not only does unchecked pain hold you hostage by clouding your thinking and sapping your motivation, living with severe ongoing pain can actually have serious long-term effects.
The repeated experience of pain over time can re-wire the brain into a habit of experiencing those feelings, even when the physical source is no longer present. In other words, your brain can get so used to feeling painful sensations that it forgets how to switch them off.
Pain can cause depression, isolation and a dramatically reduced quality of life. Like all symptoms, it’s an important message from your body that something is wrong which needs to be addressed.
Important decisions only you can make
A key question I often use in coaching is ‘What are you prepared to do to get out of pain?’. This is valuable in setting boundaries, creating a long term health vision and figuring out the best next step for you right now. It opens up areas to explore such as:
What are your preferences and boundaries around medication?
What routines or habits are you willing to commit to?
What expert help is available to you to help manage your pain?
What does quality of life mean for you?
How could your life be different if your pain was under control?
These are all important questions that only you can answer. The responses you come up with are unique to you because they are determined by your values, strengths and life experience.
My goal for each of my clients is to see them get back in the driver’s seat and feel empowered over their diagnosis. Asking meaningful questions and exploring topics together allows that to happen. Respecting you as the expert of your own life and entering a non-judgemental space brings clarity and can open up new options to investigate.
Finding your own way out of pain
My approach to pain management has evolved throughout the years since my diagnosis. While some people find complete relief through biologics or cannabis or a particular diet, I never did find that one magic bullet. My pathway out of the pain of ankylosing spondylitis (and I am virtually pain free these days) has been a combination of many different approaches; positive steps that have added up over time to a great result.
Those of us with AS make up a special club. Our pain is an experience none of us would have chosen, but we’ve made our way through it and we’re still here.
What has your experience with pain taught you about your own resilience?
How can you show yourself compassion on the days when the pain feels overwhelming?
What needs to happen next to give you some much needed relief?
If you need some help figuring it out, let’s talk.