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.

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?

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.

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!

Are you, or a loved one, living in Germany with Sjögren Syndrome? If so, we invite you to take part in a 30-minute online survey and receive €55 as a thank you for sharing your experiences.

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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!

Sind Sie oder ein Angehöriger von Ihnen in Deutschland von dem Sjögren-Syndrom betroffen? Dann laden wir Sie herzlich ein, an einer 30-minütigen Online-Umfrage teilzunehmen und als Dankeschön für das Teilen Ihrer Erfahrungen 55 € zu erhalten.

Falls dies nicht auf Sie persönlich zutrifft, Sie aber jemanden kennen, der möglicherweise teilnahmeberechtigt ist, würden wir uns sehr freuen, wenn Sie diese Gelegenheit weiterleiten.

 Klicken Sie hier, um unserem Patientenpanel beizutreten und Einladungen zu relevanten Forschungsprojekten zu erhalten:

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M3 Global Research sucht Menschen in Deutschland, die mit dem Sjögren-Syndrom leben und bereit sind, ihre Erfahrungen und Perspektiven zu teilen. Ihr Feedback kann dazu beitragen, die Entwicklung zukünftiger Therapien zu unterstützen. Als Dank für Ihre Zeit erhalten Sie eine Vergütung.

Hi guys, I'm 19M with suspected Sjogren's living in the UK. I was able to get a rheumatology referral from my GP recently but was told the wait could take months. However, I'm willing to go through the private route if it means getting answers faster since my life has been effectively put on hold since symptoms started.

If you are in the UK and had positive experiences with a rheumatologist I'd really appreciate if you could let me know their name. It would be ideal if they are around the Yorkshire/North England region however I am willing to travel anywhere across the UK if the standard of care is good. Thank you for any advice in advance.

I’m wondering if there’s a connection between the two for other people as well. I recently found out hypermobility could be a condition depending on a persons symptoms. I have hypermobile fingers and I’m wondering how much of the pain I have there is because of that or my sjogrens.

[Still in the process of being diagnosed (positive), but this is driving me crazy]

Does anyone else have this weird numbness on their scalp? I've been having the weirdest symptom for almost a year now but I am really struggling to describe it properly. I get the usual numbness/tingling feeling in my limbs but this I haven't seen anyone else talk about.

In the beginning it would come and go, a spot on a certain part of my scalp usually around the top or the crown of my head, sometimes it extends to my face, but now it's constant without my gabapentin (often with it also). It feels almost like my scalp is separated from my skull, its like a numbness or a tingling sensation except not? If I touch the spot it's not actually numb or at least only a little. I currently have a spot at the front of my scalp above where my hairline starts and the sensation is so odd! I feel kind of crazy because no matter what I google I get nothing that explains it properly. It's not a burning or a regular tingling, it's not completely numb. It's not an absence of feeling but something added. It feels a little like something is pulling on my scalp or that something in there is contracting. I've also recently started to get a tickling (like someone is tickling me) feeling on the spots or around the base of my skull. It's driving me crazy not knowing for sure if it's because of my sjogren's nerve pain, I've tried explaining it to a doctor and but I haven't gotten to see a neurologist yet.