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adixon

581d

It seems like ever since I've been diagnosed with Sjogren's, I just keep learning about another symptom that I didn't know previously. I feel like there's no one Sjogren's resource that offers a solid comprehensive list that encompasses all of the ways that Sjogren's can affect our bodies. Which is such a shame because as I've gone from website to website reading through a hundred short-sighted lists, I occasionally find a symptom or two that makes me stop and reflect on my past health struggles. Then suddenly, I feel this rush of relief and peace of just knowing that "oh, that all makes so much sense now." Everyone deserves the release from the unknown and a break from the neverending search for answers. For those of you with Sjogren's Syndrome (First, please indicate whether you have primary or secondary Sjogren's): What all symptoms do you experience and what would you say are the worst and/or most debilitating ones to you? I'll go first. You aren't required to be as detailed as I am choosing to be - whatever's comfortable. I have Primary Sjogren's. Chronic pain everywhere (particularly along my spine from top to bottom) with major stiffness in all of my joints, extreme fatigue, constant brain fog in varying degrees, mouth & lip dryness (occasional ulcerations in mouth & inflamed papillae when I'm really dehydrated), sensitivity to UV light (going from fine to sun poison in under an hour), irritable bowel syndrome, interstitial cystitis (painful bladder syndrome), random occurrences of shortness of breath, sometimes neuropathy issues occur. Since I've been managing my pain, my fatigue has become the most debilitating symptom for me. I struggle with staying awake A LOT. When it starts to hit me, there's no delaying it, not even by a little, I'll just fall asleep while doing whatever. I feel like it's also a very difficult symptom for people to understand and thus be compassionate towards. I receive a lot of judgement over my legitimately physical inability to stay awake and I try to express that it's not my choice but I'm always treated as if I'm choosing to be like this.

    • Bluebird7

      570d

      I also try to deal with the "need to sleep" symptom. But I also have other "issues" like the IBS as well.I am just doing the best I can to try to deal with issues as they occur.

      • adixon

        570d

        @Bluebird7 how long have you been diagnosed and how long have you symptomatic?

☝ This content is generated by our users and it is not a substitute for professional medical advice. Please consult with your physician before making any medical decision

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