September 16, 2021
Anyone else get lost in the slew of confusing and hard-to-pronounce terminology that comes along with an Axial Spondyloarthritis diagnosis? It took me years to figure out and get used to many of the names of the symptoms and classifications associated with Spondyloarthritis.
Even those symptoms that I can identify by how they feel, I still have trouble pronouncing and explaining. When it comes to chronic illness fatigue, for example, I often find myself thinking that you have to experience it to understand it. In an effort to help those who are newly diagnosed or have loved ones diagnosed with Axial Spondyloarthritis, I’ve compiled an AxSpA patient dictionary that includes many of the most common terms, symptoms, and diseases.
A disease that’s hard to pronounce and even harder to explain. A diagnosis of Ankylosing Spondylitis (AS) means a rheumatologist identified some spinal or sacroiliac joint damage on imaging tests. But the pain from AS is pervasive, stretching from the feet up through the neck. Often joints feel like they’re rusted over, limiting flexibility and mobility, and fatigue from an overactive immune system can feel like gravity pull gradually increases as the day progresses.
Axial Spondyloarthritis (AxSpA) is the category of Spondyloarthritis that primarily affects the spine and encompasses both Ankylosing Spondylitis (AS) and Non-Radiographic Axial Spondyloarthritis (nr-AxSpA). But ‘primarily’ is a wildly misleading term. AxSpA is a systemic disease, so it can potentially screw with the functioning of any organ system. To make things more complicated, there may be as many variations of this disease as there are people diagnosed, since different people tend to experience a different combination of symptoms. There is no cure for AxSpA.
A term used to describe when a spine literally looks like it’s made of bamboo on imaging tests. This effect is caused when the vertebrae in the spine fuse together during advanced cases of Ankylosing Spondylitis.
A medication prescribed to those with Axial Spondyloarthritis, among other autoimmune conditions. The type of biologics used to reduce damaging inflammation and slow disease progression in AxSpA are TNF-inhibitors. These are strong medications that some people swear by, some use for a period of time before side effects prompt a treatment change, and others avoid due to rare but potentially serious side effects.
Is it acid reflux, is it heart issues, is it a respiratory condition? Or is the dull, sharp, or burning pain around the breastbone, at the base of the ribs, and where the ribs meet the spine costochondritis? Sometimes the chest wall pain from costochondritis is misleading and frightening, since any pain in the center of the chest is alarming. Costochondritis is a common symptom of AxSpA and occurs when rib joints become inflamed.
Dactylitis is inflammation and swelling of the fingers and/or toes that’s not usually limited to one joint. This symptom is more common in Peripheral Spondyloarthritis, but since so many of the symptoms overlap, dactylitis can occur in those with AxSpA as well.
An extremely common symptom and often indicator of Spondyloarthritis, enthesitis is the inflammation of where the tendons and ligaments attach to bone. One of the more common areas where Spondies get enthesitis is in the heel, where the Achilles Tendon attaches. Another fairly common area is deep in the hip joints, since there are so many ligaments and tendons in those two large joints. Enthesitis is painfully frustrating and can affect a joint’s range-of-motion.
Chronic illness fatigue is NOT the same as being tired. Instead, fatigue of this nature feels like one’s body is far heavier than it actually is, as if wearing strap-in ankle weights all over the body for all activities throughout the day. Sometimes, this type of fatigue can be debilitating and is not often relieved by rest.
The term used when AxSpA symptoms ramp up dramatically. Disease flare-ups can mean more pain, more inflammation, and more fatigue. Sometimes flare-ups are localized, meaning they’re limited to one area of the body. At other times, flare-ups affect the entire body and can take anywhere from days to weeks to resolve.
Immunosuppressants are a general term for medications designed to limit or prevent a specific activity within ones immune system. These drugs are often used to manage AxSpA by suppressing a function of the immune system that causes disease activity and progression.
Several sweeping terms are used to describe AxSpA’s chronic illness type: autoimmune disease, inflammatory arthritis, immune-mediated disease, among others. Inflammatory Arthritis refers to the types of arthritis that are affect multiple joints across the body and spurs from changes in the way the immune system functions.
When the spine is so curved that it takes the shape of a candy cane, almost. Not all people with AxSpA will develop this extreme curve of the mid and upper spine. For those who do, kyphosis can affect breathing since the exaggerated forward curve of the spine leaves less space for the lungs to expand.
Non-Radiographic Axial Spondyloarthritis
The flip side of the coin to Ankylosing Spondylitis, Non-Radiographic Axial Spondyloarthritis (nr-AxSpA) is the other type of AxSpA. The possible symptoms are similar among both types of AxSpA, but nr-AxSpA is diagnosed when individuals do not have visible damage to the spine or sacroiliac joints on imaging scans.
AxSpA pain and stiffness improves with movement and gets worse when motionless, so lying in one place for hours on end is not always comfortable. Painsomnia is an informal term that describes how back pain often interrupts and sometimes prevents a good night’s sleep in those with AxSpA.
There’s Peripheral Spondyloarthritis (similar to AxSpA except that the inflammation primarily affects the peripheral and not the axial joints) and then there’s peripheral arthritis. People with AxSpA can also develop peripheral arthritis, or pain and damaging inflammation in the peripheral joints--hands, feet, elbows, knees, wrists and shoulders.
A term us Spondies use to refer to ourselves and other diagnosed with Spondyloarthritis.
A Spoonie is someone whose chronic illness affects their day-to-day activities because of their energy level and fatigue. The term comes from the from ‘Spoon Theory,’ a metaphor that uses physical spoons to demonstrate how fatigue affects those who have chronic illnesses and how depleted energy levels cannot be easily replenished with rest.
A common form of eye inflammation that’s a side effect of AxSpA. Moderate to severe uveitis causes pain, light sensitivity, redness and blurred vision. Sometimes the light sensitivity is so bad that any sliver of bright light peaking through closed curtains can feel as sharp as a needle piercing into the affected eye.
Please keep in mind that I am not a medical professional, but a woman living with Ankylosing Spondylitis. These definitions are derived partially from research, partially from my own experience and are in no way meant to replace or masquerade as medical definitions.