Understanding My Pain Helps Me Manage It
Even with a treatment that is effective and regular exercise, AxSpA reminds me that it is still here, and manifests itself through new pain. The condition is active, it changes with time and I am constantly listening to my body and learning how to deal with an emergent painful spot. Sometimes it's the same tricky point that wakes up, as a reminiscent tender area where there once was a flare.
Even with chronic pain, there’s movement. It doesn’t stay the same and therefore the way to handle it requires me to observe, try few things out and see what works. Of course, there are things that will always help me such as a heating pad, a hot bath, doing a course of painkillers if the pain is acute for few days, or massaging the tender zone with arnica oil or tiger balm to ease the pain. That gives me some confidence that I may have the answer to deal with an occurring pain.
However, my way of thinking about pain and so my approach have changed over the years, for the better, thanks to self-management programs I have done and therapists I have met along the way. I used to think that once set this chronic pain will be here forever and I just had to live with it. Somehow, I had a fatalistic view of it and so I did not think that pain could be changed by my own doing. That left me powerless and helpless, quite desperate really.
My brain is a part of my pain, too
Now I know that while it’s important to listen to my body, my brain plays a big part in pain sensation and management. Pain is a protective mechanism with a positive intention to warn me about something damaging my body. I worked on pain for a couple of years in the lab as a researcher. I was fascinated to discover that there are no such things as pain molecules or receptors in the body.
We may feel pain related to heat or cold for example, or after hitting our body over a hard surface. What happens is we have receptors for heat, or cold, or pressure receptors being suddenly activated. That sends a strong signal to the brain that something damaging may have happened to our body. Over time, with chronic pain, what happens is we can sensitize our pain by almost anticipating it, being "conditioned" to it, as we experience pain regularly because of a long-term condition. So, we might feel pain even when there is no strong physical symptom happening.
The pain cycle and how it affects us
Pain is a construct of our brain to put a label on a physical manifestation of something going wrong on our body. But then our brain can start tricking ourselves, after repeated events of increasing pain, by signaling to us PAIN all the time. That can be a way that chronic pain is established and it’s hard to treat it only with medication. I learned that when I attended a chronic pain management program. During that program we worked with a psychologist and a physiotherapist, to discuss in detail the concept of the pain cycle, and how to break it with talking therapy and embodied approaches.
We did some gentle stretches, brain activities to distract the mind away from the pain, we also did regular mediation and relaxation. In psychology, we used the cognitive behavioral therapy approach to develop a new mindset, a new healthy routine, and a useful toolkit to cope with pain. The idea was to break the vicious cycle of thought patterns, particularly negative thoughts, developed because of pain.
This was probably the most powerful combined approach I have discovered to handle chronic pain. The mind and the body work hand in hand in that process of chronic pain and so the way forward to manage that pain needs to involve both the body and the mind. My view of the pain is not fatalistic anymore. I am being less attached to the sensation itself and more focused on the way forward to live better with it. Now I feel hopeful every time there’s a new pain coming, as I have some knowledge, resources to use, and people to contact for support.
Does reading AxSpA patient stories help you in your journey?