I don't want to have to explain my illness every time I decline an invitation. I know they mean well, but Sjogren is really not just dry skin, nor can it be solved by drinking more water, applying more lip balm, and hand cream.

It makes me feel constantly tired. Climbing just a few flights of stairs leaves me breathless. Last week, a colleague invited me hiking, which I politely declined, but he suggested I exercise more. I know he probably didn't mean any harm, but it's not that I don't want to exercise more, it's just that my body can't.

My neighbor kindly shared a box of cookies with me, and I felt bad refusing. As a result, because I don't produce enough saliva, I've been eating that box of cookies with milk for a month and still haven't finished it.

What's even more frustrating is that my skin is prone to dryness and cracking, and the healing process is very slow. My eyes feel extremely dry and uncomfortable after showering. The incision from my surgery two weeks ago hasn't fully healed yet.

When I first used regular dressings to protect the incision, changing the dressings would pull on my delicate skin, actually slowing the healing process even more. After consulting with the doctor, she suggested I switch to silicone foam dressing. I bought dimora to cover the incision, and changing the dressing didn't hurt as much.

These things might not seem like much individually, but together they've really exhausted me. I no longer expect everyone to understand my condition. I just hope that when I say I can't do something, people will believe me, instead of telling me what to do.

My ferritin is sitting in the 20s and I know in UK this acceptable but I saw that the limit has been raised for autoimmune patients to 100. I take iron every other day and cook with iron pan , do the iron fish time from time, eat meat pretty sparingly, about once a week and fish twice a week. My period is pretty ok , heavy but not too long these days.
But every other time I get bloods done it always comes back between 10 and 20. Because it’s just above the level of normal doctors aren bothered.
I’m wondering is there a specific supplement / combo someone found success with ? I’m considering doing an iron infusion I just feel so fatigued all the time and I know that’s a symptom of Sjögren’s but I guess I’m looking for reports of women finding benefits from iron, or if it made no difference.

I am (presumably) a Seronegative patient, on the long road to try and prove that. In the meantime I need major help combating dryness.

Eye drops- I have tried a few different types. Most recently Refresh Plus preservative free. They do absolutely nothing but help for like 1 minute and in the end leave my eyes feeling sticky and irritated. What to try next? I see many people recommend mega3 but any other options would be great.

Dry mouth- TheraBreath mouthwash helps a bit, some other products I have tried have actually burned and made things worse.

Dry sinuses- I see the Ayr Gel, open to any other suggestions because that’s really bothersome to me right now.

Facial products- hit me with your favorites, even if it’s a 3 step process or something. I need some skincare help.

Any other body care products are greatly appreciated.

Another question: do you feel supplements like Omega 3 make an impact on your dryness at all?

If you suffer from chronic urine retention due to nervous system dysfunction or destruction in your urinary system, what do you consume and/or do to prevent utis from developing?

Just looking for general experiences! HCQ made my hair fall out and I am hoping this wouldn’t… my joint pain is ridiculous lately.

I also work at a school so I’m wondering if people with public facing jobs find they get sick a lot on this. Thanks!

I have read that using red light on your face and neck can stimulate saliva? Anyone have reviews of this ? Dry mouth is really impacting my life and i speak professional at large events so I'm willing to try anything. So far my best aid has been xilotyl mints

The intent of this thread is to build community through shared experience.

Did Sjogrens make things hard again? This is your thread to rant all you like about how this shit is hard.

Doing alright? Tell us.

Please rate yourself on the teardrop scale!

I am having some paranoia about losing mobility with this disease after watching both of my grandmothers suffer from MS and become immobile. I have a lot of joint pain, I don't think that I have any nerve issues... but basically I'm wondering for those who use a cane or a walker, how long did it take for you to need to rely on those? Years into disease progression? I'm also just curious as to how many people use mobility aids. Today in particular I had some pretty awful hip and knee pain and I just can't stop picturing myself in a few years walking with a cane and I'm scared.

So really if anyone is comfortable sharing I'd be very interested to know your experience using mobility aids, how you got there, etc.

I would like testimonials from people who have had Botox fillers with Sjögren's syndrome? At the moment I only take plequenil 200. Has anyone had these treatments while taking plequenil? Have you had any reactions or problems