Category 3- General systemic features
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Patients and doctors tend to think about diseases based on visible and measurable manifestations. This is partly why dryness (sicca) gets so much attention in Sjogren’s.
Severe fatigue, widespread pain and malaise are sometimes called “benign” manifestations in the literature. This unfortunate term further perpetuates an already dismissive attitude toward Sjogren’s.
Life-changing symptoms such as disabling physical fatigue, flu-like malaise, widespread pain, and “brain fog” occur in the vast majority of patients (2, 10, 26). The burden of these disease features can be devastating. The functional disability in Sjogren’s is as great as in SLE, and RA patients with active disease who fail TNF therapy (27, 43, 44).
Health-related quality of life (HRQOL) is more dependent on fatigue, pain, and depression than on the severity of dryness symptoms (27). Yet little research has been done about these core features. They are often ignored by clinicians or dismissed as stress or anxiety. It can be hard for clinicians (and family members) to “get it” that a patient who looks well and has relatively normal labs can feel so sick.
Rheumatologists and PCPs should be familiar with the SSF Clinical Practice Guidelines for systemic management, including pain and fatigue.