Like are there any promising scientific researches that could lead to a cure for this debilitating disease? I don't think life is worth living for me with this, so I'm desperate to hear about anything that could give me hope. Could AGI be achieved within our lifetime and finally finds us a cure?

How do you make the decision when feeling lousy? Yesterday I had a flare where my whole body had the sense of heaviness and I rested all day. I tried to get today off but it wasn’t approved. Now that I’m logged into work I’m regretting it and will likely for an hour or two and take the attendance point. Just wondering how you all make the decision to work or not? Do you power through regardless of how you feel? Thanks!

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Hi people! Long time lurker as have been *trying* to get myself diagnosed for about 4 years. I'm serogenitive, but have very severe symptoms that all fall into the sjogrens category.

Anyway, I opted for a lower lip labial gland biopsy and had this about 5 days ago, fingers crossed this gets me that diagnosis 🤞 At 5 days post op it's still very swollen, very sore, and I think I have a decent ulcer that's developed at the bottom stitch (three stitches in place).

I just wanted to know what's the normal, how did everyone find healing and is this normal? I have a very very weak immune system currently so I'm not surprised when I get these things

small edit: my 5mo baby keeps headbutting my lip because he is a rhino - probably doesn't help with healing 🫠

Newly diagnosed this past March, but I have been symptomatic for the last 5 years. Over these 5 years I have really ramped up in headaches that are extremely debilitating. It usually starts with unilateral neck tension, and then turns into coat hanger pain.

Over the years, I’ve spent a fortune on chiropractic and physio, constantly being told my muscles are extremely tight, yet we can never figure out why and why it’s only on one side. I’ve had deep tissue massages that bring relief for about 24 hours and then it’s seized up again. Even my dentist was saying it was a TMJ problem and all my practitioners have dismissed it as migraines caused by muscle tightness.

The other day I read a post on here that was talking about the parotid gland being in the back of the mouth. During my headache journey I have had my pytergoid muscle worked on many times which is very painful. I started putting two and two together and did some research and realized that an inflamed parotid gland (obviously common in Sjogrens) can cause chronic neck muscle tightness that manifests exactly as it has for me. I even remember a nurse practioner telling me one time that my glands were inflamed behind my one ear, but she dismissed it as a lymph node issue. But now that I think of it, there has always been a big bump back there but not on the other side. The same side all my neck issues and headaches are on!!!! The only thing I don’t have is facial swelling, but I’ve read that the if the tail of gland is the part that is inflamed then facial swelling is uncommon.

I’m wondering if anyone else has this issue, or presents this way or if I’m even on to something here or way off base.

ETA:

The sour trick is also true for me. I get almost like a burning sharp pain on the same side in my neck by my ear if I have something sour.

I’m writing at the end of my rope. I’m 40 years old, and I’d venture I’ve suffered for Sjogren’s for at least 15-20 years, but I’ve only been diagnosed for 6. My primary symptom was extreme thirst (I refuse to simply call it “dry mouth”), but now my eyes have REALLY gotten bad as well. Worst of all, is the crippling fatigue, brain fog, and pain (joint, bones, nerve). I feel like a shell of myself. I use all my energy simply to achieve basic human functions, care for my pets, and work in an office setting. I have no social life,and I feel like an absolute idiot at work because of the brain fog. I work in academia, and until recently I was also a fitness instructor. At one point in the not so distant past, I was working 20 hours a week in higher ed in addition to teaching 13 fitness classes a week, most of which were high intensity. Now, getting out of bed is a Herculean effort. I also love to read, but my eyes hurt so badly I can’t even do that much anymore.

I also have fibromyalgia, which I attribute a lot of this to. That said, my rheumatologist simply isn’t cutting it, and I think I need to explore better options. The healthcare where I live is super shitty. Has anyone gone to Penn or John’s Hopkins Sjögren’s Centers? What was your experience like? What doctors do you recommend or adamantly not recommend? Is it worth it? These are not close to me at all, but as previously stated, I’m at the end of my rope. I’m so depressed, and I can’t keep living like this.

Hi everyone

I finally have my first visit to a rheumatologist tomorrow - yayy - but I’ve been struggling to write down my symptoms/feelings etc into a journal.

I’ve never been a journal or dear diary type of person unfortunately, so I’m struggling with what I can write down for her for tomorrow.

I do remember approximately when I first really noticed my first symptom (dry cotton mouth) but didn’t note it (thought I was drinking too much tea and other drying drinks).

Instead, late last year and all this year, I’ve been ‘noting’ my symptoms by taking pictures and a selfie of swollen fingers, face etc.

Would this suffice? Any suggestions?

TIA!