“Some days I do my best to just bear it, ignore it, focus on living, but some days my pain wins - and I struggle to keep my mind positive and just want to cry.... which on occasion I do. -- Faith (Ankylosing Spondylitis Patient)
Nearly one in every 100 people in the U.S. has spondyloarthritis (SpA), the name given to a group of closely related rheumatic diseases that primarily affect the spine, although other joints may also be involved. For the more than 3.2 million Americans currently living with the disease, uncontrolled chronic pain may be one of many serious complications they face. Each September during Pain Awareness Month, the Spondylitis Association of America (SAA) promotes initiatives to raise awareness of the disease, support those impacted, and highlight resources to better understand, manage, and treat pain.
What's being done?
New research and scientific studies are shedding more light on the sources of pain. For SpA patients, there are two sources that may be at play. The first is inflammation. Frequent pain and stiffness are hallmark symptoms of the disease. The second source is called centralized pain, which is believed to be generated by the nervous system itself. Individuals living with centralized pain are also likely to experience issues with sleep, fatigue, memory, and mood.
An MRI can help detect active inflammation. However, it may not tell the full story of a patient’s pain experience. To effectively manage and treat pain, a health care partner will need to make a comprehensive assessment. This entails not only looking at the person’s physical symptoms but also gathering insights from other factors such as their psychological state, their background and family history, occupation and employment status, and any other factors that impact their daily activities.
What can I do?
For those living with SpA, medication, exercise, and physical therapy are important elements in a treatment regimen designed to reduce inflammation. However, not all individuals respond to the same treatment plan, and centralized pain is even trickier to manage using these treatments alone. In such instances, a rheumatologist or pain management specialist can help identify and recommend other options. Communication is critical. When SpA patients seek assistance for managing their pain, their goal may be to reclaim, as much as possible, the quality of life they enjoyed before SpA.
Measuring progress toward this goal can be frustrating for SpA patients if the treating physician is primarily focused on reducing pain versus restoring daily function. It is therefore vital that patients and their treating physician have a transparent conversation about what is realistically attainable and agree on individually tailored goals. This might equate to a patient regaining the ability to hold their children; make it all the way down the driveway to the mailbox, or even comb their hair. And what may seem like small steps, everyday tasks, to those of us who do not live with chronic pain may be a breakthrough to someone who does.
Chronic pain can be physically and psychologically traumatizing. Beyond the physical pain itself, those affected may find their experience compounded by fear, anxiety, and even feelings of isolation. For Pain Awareness Month, SAA will continue to share a wide range of resources to help SpA patients living with chronic pain make informed decisions about their health; share stories from members of our community; advocate for better access to care and more funding for research; and raise awareness of the personal, economic, and social impacts of chronic pain.
To learn more about SAA or our resources, visit us at spondylitis.org.
Jason Blackwell, Director, Brand Experience and Public Affairs, Spondylitis Association of America
Spondylitis Association of America https://spondylitis.org/resources-support/