Snizzles

127d

i was just officially diagnosed today and i feel so empowered. I'm 20 and have had debilitating fatigue and unexplained fevers for years. i have hope now! (and i now understand why contact lenses suck for me! lol)

acute lethargy

Sjogren's syndrome (SjS, SS)

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  • Neuco

    127d

    Congratulations! It's a weird thing to congratulate, but I know how much of a relief it is to finally get answers! 💙

    • Snizzles

      126d

      thank you! And yes, it does feel strange, but it's so nice to finally have something concrete ☺️💚

  • Afsara

    126d

    I’m happy for you now that you understand what’s going on. How exactly did you get diagnosed? I’ve had the same fatigue for 8 years now and I feel feverish a lot even when I don’t have one. My eyes, mouth, and lips are always dry and I think I might have SS too. Next month I have an appt to talk about my symptoms more and do testing…dr said that SS might be a possibility. I really feel like I still have an undiagnosed condition, even if it’s CFS.

    • Snizzles

      126d

      I've been tossed between nurse practitioners and physicians assistants for several years now. I was able to get in with my grandparents medical doctor finally. I just complied a list of all my symptoms and previous labs. He seemed to know what to look for. He ordered lots of tests including a cortisol test for adrenal insufficiency, a full tick borne illness panel, an echocardiogram, among many others. But my ANA levels tested to be 3.5 where the normal is below 0.7. It was the random fevers that seemed to tip him off

  • Afsara

    126d

    Also, my eyes always feel dry but contacts make that twice as bad and my eyes start to ache which makes me tired

    • Snizzles

      126d

      yes! I can't wear them for long because eye dryness and fatigue registers as full body fatigue

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