"Ankle-What?" - Ankylosing Spondylitis: What it is and how to thrive with AS
Yes, we know. It’s hard to pronounce and most people who receive this diagnosis have never heard of it. But for those dealing with ankylosing spondylitis, or AS for short, understanding what it is, how it’s diagnosed and what we can do about it is integral to feeling better and living your best life.
Ankylosing spondylitis is an autoimmune inflammatory arthritis. In that way it is similar to rheumatoid arthritis, but that’s where the similarities end. Like all autoimmune conditions, AS is a result of immune system dysfunction. “Autoimmune” means that the immune system, for reasons that are unclear, attacks the cells and tissues in your own body. Instead of fighting off bacteria and viruses, autoimmune inflammation fights with your own body.
The pain and inflammation experienced by those with AS is found primarily in the low back and large joints (hips, knees, shoulders). The entire spine can be involved, but often the first symptoms are felt in the low back.
A long journey to diagnosis
Although AS was previously thought of as a condition seen mostly in men, we now recognize that it is likely found equally among men and women. This fact is still making its way through the medical community as we combat years of bias in our medical research. As a result, those of us in the healthcare field must be diligent to always consider this diagnosis when evaluating women with back pain. Regardless of gender, it can take 8-10 years to come to a proper diagnosis of AS. Thankfully this statistic is coming down, but for those suffering, not fast enough.
There are many reasons for the lag time in diagnosis, but one of the largest is the fact that often the first symptom is low back pain. This makes things difficult because low back pain is very common – much more common than AS. In fact, most of us will experience an episode of back pain at some point in our life, whereas only a small fraction will develop AS. The pain that most people experience is temporary and will resolve on its own within 10-12 weeks. Most of the time we never get a good answer as to what causes our back pain, but therapies such as pain relievers, heat packs and physical therapy can help.
So, how do rheumatologists distinguish between regular back pain and AS? Good question. Our job is to figure out, as best as we can, if your back pain is inflammatory. The way we do that is by asking the right questions.
Do you wake up stiff in your back in the mornings? If so, how long?
When your pain is flaring? What makes it feel better–moving or resting?
Have you noticed any other joint or tendon pain and, if so, where?
Typically, those with AS report needing a good hour, usually with a hot shower, before they feel comfortable in the mornings. Then, once they are warmed up, they would rather stay standing, walking or moving. Sitting or lying back down will cause them to stiffen right back up. Going to the gym actually helps as the movement keeps them limber.
On the other hand, someone with standard back pain or back pain from a disc bulge or pinched nerve will just want to lie down and rest. Back pain may be a hallmark of AS but it is not the only area someone can feel pain. Pain and swelling of knees and shoulders is common, as is swelling around the Achilles tendon.
People with AS may also experience non-joint symptoms, and diagnostic questions can sometimes take people by surprise. For example, it’s important to ask whether you have eye pain, rashes, stomach pain or diarrhea. The reason for this is that AS is one disease under a collection of conditions called seronegative spondyloarthropathies. (We know! More unpronounceable words! Stay with us…)
“Sero-negative” means no antibodies are found in blood tests
“Spondyloarthropathy” means disease of the back
The conditions that fall under this category are all distinct but share certain features. These conditions include: psoriatic arthritis; inflammatory arthritis associated with inflammatory bowel disease (Ulcerative Colitis, Crohn’s disease); reactive arthritis; and uveitis. One way you can think of this is that these conditions live along a spectrum. People with any one of these conditions can slide along this spectrum at any time during their disease. So, someone diagnosed with AS may over time develop inflammatory eye disease (uveitis), rashes (psoriasis), or GI problems (Inflammatory bowel disease).
What does this mean for you if you have AS? It means that it’s really important to have a trusting, long-term relationship with your care team. And if you develop new symptoms that may seem unrelated, you need to let your doctor know!
Thriving with AS
Thankfully, as is the case with rheumatoid arthritis and psoriatic arthritis, treatment has come a long way for those with AS, including through the use of medicines we call “biologics.” We no longer have to rely only on pain medications to keep someone with AS limber and pain free. We’ve also learned a lot in the past 10 years about the effect of diet, sleep, stress management and movement on AS. With dedication to lifestyle changes, people with AS can take better care of themselves and experience a higher quality of life.
Many people with AS are not properly diagnosed. Others who have a diagnosis still aren’t getting the full care and guidance they need to thrive. This is why we built Motto.
With Motto, your healthcare team of rheumatologists, nurse practitioners, health coaches and dieticians are all ready to provide you with a holistic care plan that addresses ALL of your needs.