The first symptoms of nr-axSpA are often described as persistent pain and stiffness in the lower back and buttocks, which come on gradually over the course of a few weeks or months. This pain and stiffness are usually worse in the mornings and during the night, but may improve after a warm shower or light exercise. At first, discomfort may only be felt on one side, or alternate sides. The pain is usually dull and diffuse, rather than localized. Sometimes, these symptoms can be severe.
Although symptoms usually start to appear in late adolescence or early adulthood (ages 17 to 45), symptoms can occur in children or much later in life. The course of nr-axSpA varies greatly from person to person — no two individuals may have the exact same symptoms.
The back pain people with nr-axSpA experience is usually inflammatory back pain. Key characteristics of inflammatory back pain include pain and stiffness that:
Pain and stiffness in other areas of the body, such as the neck, shoulders, the ribs, hips, knees, and heels, are also common. In some individuals, pain does not start in the lower back, or even the neck, but in one of the peripheral joints mentioned above. This can be confusing since, without the immediate presence of back pain, nr-axSpA may look like other forms of arthritis. A person’s sex can affect the location of initial pain in nr-axSpA. For some women, the neck and peripheral joints are often affected first, whereas in men it is more likely to be the lower back.
Fatigue is a common complaint in nr-axSpA, and one that doesn’t often receive the attention it deserves. Fatigue can negatively impact one’s work, family or social life, ability to focus, and even emotional state.
Uncontrolled inflammation is the factor most closely associated with fatigue in nr-axSpA. If inflammation is extensive, then the body must use energy to deal with it, producing feelings of profound, chronic tiredness. The release of certain cell messengers (cytokines) during the inflammatory process also can produce the sensation of fatigue, as well as mild to moderate anemia in some cases, which itself can further exacerbate fatigue. When inflammation is well controlled and the disease is properly managed, fatigue often lessens and energy returns.
Uncontrolled pain and stiffness can make it difficult to sleep. Besides causing fatigue, sleep deprivation can increase pain, creating a feedback loop of pain causing sleeplessness, which then causes more pain, and so on.
For all these reasons, effective pain management is crucial. Though many people with nr-axSpA respond well to medications alongside exercise and physical therapy, others experience more severe pain even with appropriate treatment. In these cases, it is important to work with your medical team to find appropriate solutions and design a comprehensive plan to treat the pain. Speaking with your rheumatologist about pain and fatigue is the first step.
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