The Pain Experience is Personal – A Journey of Trial & Error
By Rebecca Gillett, MS OTR/L – Live Yes! With Arthritis Co-host
It’s a constant battle trying to manage the chronic pain of arthritis, especially if you’re new to the diagnosis. And everyone around you wants to offer their two cents of what they think you should do to manage your pain. But that right there is the problem. It’s not their pain. It’s yours. You’re the one experiencing the pain. Ultimately, you’re the one who will benefit from a treatment if it works or not.
But how do you get there? How do you figure out what works to alleviate your pain? It’s not a straight and narrow path — whatsoever. It can feel like you’re riding a bike on a mountain road to the top, struggling to push those pedals so you don’t roll backwards. It’s hard work. It’s difficult. It’s frustrating. But in the end, that treatment can be your saving grace. But you won’t know it unless you try it. And of course, some days one strategy might work, but on another day, it might not. That’s why keeping a daily pain journal is important. That’s why having multiple tools in your toolbox to manage pain is essential and why getting the patient education you need is vital to preventing and managing arthritis pain.
I learned the most about managing my arthritis pain as a graduate student in occupational therapy (OT). I became an OT to help other people learn what they can do to take control of their symptoms and pain. It’s something I was not taught in the first couple years of living with rheumatoid arthritis (RA) in my mid-20s. What I learned the most as an OT student was the importance of taking into consideration all of the factors that can affect your experience of pain – not just physical factors, but also how the environment around you can play a role and the social-emotional factors that can come into play. I also learned about adapting. That’s what OT is all about. Learning to adapt – the person, the activity, the environment. What can you change about the task to make it easier? It can make all the difference between protecting yourself from pain in your joints. But you must really take the time and do the hard work to understand what needs to be adapted.
I loved the conversation my co-host Julie and I had on this episode of the Live Yes! With Arthritis Podcast with pain psychologist and Assistant Professor of Physical Medicine and Rehabilitation at Johns Hopkins School of Medicine, Dr. Rachel Aaron. She walked us through questions she asks when working with people with chronic pain. It sounded all too familiar to me, as an OT, as it is so much of what we do in an evaluation as well. She helps us to understand that pain is not just physical and underlines the importance of looking at all the factors when trying to find the right treatment plan for pain.
When you live with chronic pain, there are many days you feel you have no control over your body or your disease. If you have multiple types of arthritis like me (RA, OA, degenerative disc disease), you know not all treatments are created equal. What works for my neck and back pain does not necessarily work for my wrist or knee pain. So, a pain plan can be specific to the joint that is giving me trouble. That’s how personalized it can get.
Aside from proactively working to build a personal pain plan, another action you can take that empowers many patients is to participate in research. In the world of arthritis, especially osteoarthritis (OA), we know more research needs to be done to find treatments to help us get back to the things we want and need to do. Our second guest on this episode, Dr. Claudia Campbell, Associate Professor of Psychiatry and Behavioral Sciences at Johns Hopkins School of Medicine, discusses more strategies for managing arthritis pain and also shares information on how you can participate in research specific to knee OA.