Hi there @Kjchadwick, and welcome to the Sjogren’s Syndrome support board! I’m Julie, an intern with Ben’s Friends. Getting diagnosed with something as uncommon as Sjogren’s can leave us with a lot of questions, but that’s what this community is here for. If you have something specific you would like to look for, go ahead and click the magnifying glass at the top of the page to search for keywords, or browse the categories on the left of our home page. For general collections of previous discussions about symptoms, the link below to the symptoms and treatments category is also a good start:
We would also love to hear about how your experiences have been so far and get to know you! If you like, why not introduce yourself here? Sometimes all it takes is a post saying “hey, I’m here!” so others in similar situations can connect with you. Otherwise, you can directly message me or any mod (any user with a shield next to their name) if you need any assistance getting involved or using the website.
Glad that you were able to find us! Best wishes to you and your family, and welcome again to the Sjogren’s Syndrome patient support group
Hi All! I’m Kelly. I’m new to this site, and newly diagnosed with Sjogrens Syndrome. Last week actually. When my Rheumatologist told me the diagnosis, I was relieved to have answers but very scared. I just woke up one day feeling this way! My feet, ankles, and knees were soooo swelled and hurt so bad!!! Throbbing, aching, stabbing pain, all at once, plus feeling like I had the flu. I could barely move. I’m a single mom of a 5yr old, Jace. The love of my life. And I’m all he has! I NEED to be healthy!! I’m scared because if I feel like this now, at 39, How will I feel at 50?
Hi again Kelly! It’s good to hear from you. It sounds like you were hit with a lot at once, and hearing that it’s from a condition like Sjogren’s (and not some passing thing) sounds like it was quite overwhelming! While I can’t say much for knowing what Sjogren’s feels like, I feel that it is very important when I’m feeling anxious for any reason to take things one step at a time – questions about the future won’t be answered until we get there. It also helps to think about what you can do, versus what you can’t do with a diagnosis. Have you been able to try anything for symptom management yet?
Welcome Kelly! I will encourage you to speak with your doctor about this. There are medications that are disease modifying, and this may ultimately be where you are headed. This is the toughest part of the process. Keep coming here and checking in too.
Hopefully a lot better! Seriously. I have Psoriatic Arthritis, and in my 60s I feel much, much better now than I did in my 40s, when I was undiagnosed. The difference is that I understand what’s happening, I have good medical expertise, and excellent therapy. None of that can happen before you have a diagnosis.
So fingers crossed! A diagnosis is the first step towards feeling better.
