Answer Summary

Members connected over the frustrating reality that many were diagnosed with axial spondyloarthritis or ankylosing spondylitis despite having... Read more

Members connected over the frustrating reality that many were diagnosed with axial spondyloarthritis or ankylosing spondylitis despite having mostly negative lab results, with only HLA-B27 positivity or imaging evidence of inflammation guiding their diagnoses. Several members shared that their rheumatologists relied on MRI findings showing bone marrow edema or sacroiliac joint inflammation, patterns of pain, and symptom history rather than elevated sed rate or CRP levels, which many noted stayed low even during active disease. A recurring theme was the struggle to be taken seriously by doctors who dismissed their pain as simple arthritis or misdiagnosed them with conditions like fibromyalgia, anxiety, or hormones, with many members emphasizing the importance of self-advocacy and finding providers who truly listen.