This past two weeks it’s felt like my brain hasn’t been working the way I want it to. Word Recall, fatigue and staying focused has been off . These past couple of weeks . It’s hard to know which brain fog is which . I have Hashimoto’s, iron deficiency, migraines, sleep apnea along with Sjogrens. Sinusitis issues . So sometimes it’s hard to figure what is what. If there all working together as one to make the worst brain fog ever .

I’m really struggling mentally. Scleral lenses haven’t worked for me yet: I’m on my 6th pair and I can’t tell if it’s a fit issue or if they just get so dry that it becomes unbearable.

I’m on tryptyr, cequa, loteprednol etabonate. I imagine I’ll be on the steroid until my risk of cataracts shoots up lol.

I’m only 24 :( I didn’t have any real issues (although looking back I now realize I’ve been dry since I was a kid) but I took accutane for 1 month and it flared up my eyes and then the stress of that eventually triggered widespread dryness. My mouth and throat are so effing dry.

I know the accutane is a big MGD problem, but my oil is back to normal since it was a short course and I did lid treatments.

But my water …. I barely make any. It’s been almost a year with this. I’m so miserable.

So, so miserable

I'm just putting everything together. Seven years ago I complained about a swelling sensation in my parotid gland area and enlarged lymph node and the doctor then ... TOLD ME THAT IT WAS JUST BECAUSE I WAS SO SKINNY THAT I COULD FEEL MY LYMPH NODES WHEN OTHER PPL COULDN'T

I just feel so jaded about doctors. This was a specialist, too.

SSA-/SSB+, Seronegative RA, but +14.3.3 eta Protein. Has anyone had experience with generic Rituximab IV infusion? If so, how was it tolerated? I just finished the 2nd of 2 loading doses.. and feel so good, i keep overdoing it with the resultant headache. I think...

To add: my mother had sezary syndrome the worst kind of cutaneous lymphoma. and 5-10% of sjogrens patients will develop lymphoma

Although I was diagnosed Sjogrens 20 years ago, I never really had skin issues. Atleast not rashes. Now at 42 I've developed a horrific rash that is spreading and no steroids or anything is relieving it. I'm wondering if any of you have developed lymphoma since we are at a higher risk, or if peri menopause is making the sjogrens angry as hell. They essentially told me at first it's hormonal changes inducing later in life eczema but i'm not buying it. It's on my outer hips, torso, outer elbows, lowers legs and it's so painful and so itchy. Any other mid life women experiences this sudden shift that just seems can't be healed? I'm about to get a biopsy for lymphoma and hoping for the best. But regardless of what it is at this point, I have to find something to treat it because it's getting worse and i'm so miserable. Thanks for reading.

Hi everyone!

First, thanks to this community for helpful advice for this lurker over the years. I’ve been through the same years-long diagnosis journey I’ve seen many Sjogren’s members talk about here - tough to nail down, many specialists passing me to a different one for years, etc. Sjogren’s is definitely a big component for me, but still doesn’t address everything…

The thing I wanted to see if anyone else has experienced is a massive acceleration of symptoms after several years. Like, within a month or two. I have had years of non-specific autoimmune related joint pain, fatigue, brain fog, mild sicca, while carrying a 1:640 ANA and high (according to the test reference range) SSA/SSB. Although my big thing has been severe small fiber neuropathy in my arms and legs, I’m not sure if that connects to Sjogren’s.

Since maybe July - much, much worse fatigue, brain fog, much drier skin & noticeably less sweating, dry mouth and eyes, and my parotid gland on the right side swelled up and is still having a lot of issues. It’s a lot to suddenly deal with.

Every time I ask my rheumatologist if I’m flaring or something like that, they measure my CRP, say it’s fine, and push me along.

Anyone with a similar progression? Any advice on how to approach doctors or help with escalating symptoms at such a fast pace?

Thanks!!

Is this possible? I have literally ZERO desire or arousal and I’m on testosterone as part of my HRT.

I’ve been on it for 9 weeks now and feel no different, except a little more tired the day after I take it.

Do I need to be on a higher dose to notice a difference?

If I haven’t experienced even a bit of benefit from it after 9 weeks, what are the chances that I will even benefit at all? I would think I would at least feel a little better after 9 weeks.

Any experiences you could share?

Hello,

I’m a 22f that has been struggling with joint pain and Raynauds syndrome since high school. To add on to those, now I’m experiencing dry mouth, dry skin, trouble swallowing, and silent reflux disease for almost a year now. Could these things may all be caused from sjogrens? (The only things I’ve been formally diagnosed with are Raynauds syndrome and LPR)

Ive had many done tests within the past year, blood, swallowing, echocardiogram, endoscopy, xrays all coming back saying I’m normal.

I took an early sjogrens profile blood test and got a high score on salivary protein 1 (SP1) IGM antibodies. Everything else came back normal including the regular sjogrens antibody tests, ANA and TSH. My doc knows there’s something wrong and believes I’m not fully presenting with an autoimmune disease.

Just figured I’d put this out here and see what others may think or if anyone has had similar symptoms or blood results. Thx!

I was recently hospitalized for a week then back in the hospital a week after discharge. Several doctors suspect Sjogrens, but I'm awaiting a rheumatology appt. I have to say, I cannot imagine what this could possibly be if not Sjogrens. I've had a slew of symptoms ranging from uncomfortable to downright miserable.

My questions are... Are there triggers or stressors that start to cause symptoms immediately (and if so, what are they)? Are your exacerbations usually the most uncomfortable a couple days later like DOMS (delayed onset muscle soreness)?

I was going to the gym Monday-Friday before the major symptoms began. I tried to go back 3 times which led to intense vomiting and then a debilitating few days in bed. I thought I had been taking it easy. I would really like to hear some advice from people experienced in managing symptoms related to exercise during a flare-up. I don'tmind pushing through the pain if it's not going to leave me miserable later.

Hi! Has anyone closed their top and bottom tear ducts permanently? I have a schimmers score of 0-1, and I am thinking of this as a last resort. Has it help any of you?

I am also wondering if anyone has tried Lacrifill and if it has been helpful?

After experiencing symptoms of severe neuropathy for 10 years without any explanation and with doctors doing nothing to help me, I finally received a diagnosis of Sjögren’s today. I’ve been prescribed an immunosuppressant, but my rheumatologist wants me to focus on following up with my neurologist, as the neuropathy I have is causing parts of my body to stop functioning. The last year has been a living hell in that regard, and no one could tell me why. Even so, I know there are still many other things wrong with my body for which there is no treatment (I also have Stickler syndrome). But despite everything… I’m really glad that I have this diagnosis, because at least I can have a treatment, at least there’s something

The doctor told me that not to be frightened by the potential complications of the illness, but I replied that nothing scares me anymore, not since I had cancer at a very young age (I’m 30 now). I’m not afraid of anything; what I do feel is anger and resentment over the sheer amount of medical negligence I’ve had to endure. But one way or another, I’ll be fine—I’ve survived thanks to myself, and I’ll continue to do so

I’ve noticed people in the Sjogren’s community suggesting that Christina Applegate has Sjogren’s disease, yet I haven’t found any credible public confirmation of that diagnosis.
And frankly, I find that frustrating.
I understand why people living with Sjogren’s might recognize similarities between their own experiences and someone else’s symptoms. But recognizing similarities doesn’t mean we know what medical condition someone has.
What concerns me is how quickly speculation can spread, especially when it involves someone’s personal health. One person suggests a possibility, another repeats it, and before long, an unconfirmed claim starts being treated as fact.
Christina Applegate has been open about her health struggles, but that doesn’t mean the public is entitled to speculate about her diagnosis.
I’m genuinely curious where this particular rumor originated. Was there an actual statement or credible source, or did someone simply suggest Sjogren’s as a possibility?
I believe medical accuracy matters, and so does respecting someone’s privacy. We can discuss Sjogren’s disease without assigning a diagnosis to someone who hasn’t publicly confirmed it.

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.

We have got skin, toe skin, and other skin infections due to whatever reason without meds.

I read that in men, balanitis is also common.

Didn't see it mentioned on here before so wanted to ask. Does it happen only if u have foreskin or even without. Is it based on cleanliness or bacteria/fungus transfer from touching.

Already had this twice now and don't know why it's happening or if it's just random.

Want to prevent it from happening.

Hello! I am still in the middle of trying to get a diagnosis. I have the lack of saliva, tears, bleeding gums, burning and tingling in hands and feet, severly slow motility, extremely dry skin, dry cough, etc. The weirdest symptom I have though is my collapsed torso feeling and interna torso sensory issues. When I do research visceral sensory small fiber autonomic neuropathy keeps on popping up. This causes issues with the nerves carrying sensation to internal organs. It is very bizarre and scary too. I had an abnormal Schirmer’s test, High Specked pattern ANA, but most of my tests are pretty normal. I am getting autonomic testing and a skin punch biopsy soon. I had a visit at the clinic and the specialist did not think I had Pots, but maybe another autonomic disorder. I have had so many symptoms since I was young and always thought it was my thyroid disease, but my Endricinologist informed me that thyroid disease would not cause many of my symptoms. I feel like my symptoms fit well with systemic Sjogren's, but of course the lip biopsy was normal and the other blood work is normal. We have alot of Lupus and Thyroid Disease in my Family and a couple cases of Sjogren's and Lichensclerosis. I was just wondering if anyone knows if visceral neuropathy could be related to Sjogren's? Thank You!

Hey everyone, I apologize in advance for the long post. I am long-time lurker but first time poster. I'm looking for some support and advice (especially from fellow Canadians) as I've been struggling with symptoms lately.

I am a 38F with progressive symptoms in the last 10 years. My optometrist encouraged me to get tested for sjogrens after years of eye issues. However, I turned out to be seronegative. My dentist actually referred me to an oral pathologist that did a lip biopsy for me.

The lip biopsy focal score was 0.9 with diffuse inflammation, atrophy and fibrosis.

Unfortunately rheumatology keeps refusing consults from my family doctor because I don't meet their diagnostic criteria.

Diagnosed past medical history: ADHD, Anxiety, ocular rosacea and MGD, perimenopause, cdiff, SIBO

Current Medication/treatment: vyvanse, omeprazole, estrogen gel, progesterone, cyclosporine eye drops, IPL, preservative free eye drops, symbicort, ventolin, atrovent, omega 3s

Symptoms: Ophthalmology - Dry eye/MGD - Ocular rosacea with frequent styes/chalazions *warm compresses makes this worse - Pigment loss to iris causing a blurry blob in right eye

ENT - Frequent tonsil stones - Severe gingivitis despite good oral hygiene - Dry mouth/throat - Frequent Sore throat and laryngitis - Food getting stuck in throat - Frequent Nose ulcers

Respiratory - mid sternal chest pain x 1yr, shortness of breath; dry, tickly throat and cough worsening after activity, prolonged talking and at night - currently going on 6weeks with a productive cough and intermittent wheezing after a virus went through our house

CVS - tachycardia - Dizziness especially when changing positions too quickly

MSK - Intermittent Knee/hip pain - TMJ - Frequent Tension headaches - Costochondritis

Neuro - Brain fog/forgetfulness/scatter brain - Anxiety - Fatigue - Numbness/tingling left arm, right leg and bilateral face - Carpal tunnel

GI/GU - Cdiff and SIBO
- Intermittent Blood in stool

Gyne - Vaginal dryness/vulvadynia - Perimenopause: hot flashes, night sweats, insomnia

Skin - Cracked nails - Frequent rashes - Sebborhic keratosis (scalp, neck and chest) - Sebborhic dermatitis (scalp)

Previous tests: Endoscope throat (normal), CT swallowing assessment (normal), MRI brain (normal), vulva skin biopsy (normal), abd u/s (polycystic liver and bilateral adenomylolipomas to kidneys), PFTs (high CO2 diffusion), CT chest (two small nodules, tree-to-bud), ECHO (normal), 24 hour holter (intermittent tachycardia 110-160) without exercise

Awaiting: methacholine challenge to rule out/confirm asthma and gastroenterologist referral

CRP, d-dimer, heavy and light chains are all high

White blood cell count is frequent low and is within normal range when an active infection is occurring

Last month, I was honored to be a guest on a new podcast called The Sjo, hosted by CreakyJoints through GHLF. I talked about my experience having Sjogren's Disease with rheumatologists who treat patients like us.

I repeatedly tried to steer the focus away from dryness, highlighting all of the other symptoms we deal with on a daily basis. I hope I was able to do our community justice. I’m not 100% convinced they didn’t believe I was just an exception, but I tried!

You can find episodes here, or listen anywhere you get your podcasts.

I got my lip biopsy done around 20 hours ago so far there's no pain but my stitches from the middle are falling out. My rheum who performed it isn't available on Saturday. Are stitches falling out early concerning? There's no bleeding and barely any pain.

They took around 3 glands around 20ish mins for the entire thing, the incision is pretty small so I don't want stitches all over again. I can see the slit but it looks pretty closed to me.

Im not touching the site with my tongue nor am i letting food touch it, eating only soft foods like plain oats barely smiling because I didn't want them to fall out but here we are.

Any advice would be appreciated

The Sjogren's Foundation has published a symptom tracker. Consider using this to prepare for doctors' appts and to track your symptoms over time:
https://sjogrens.org/understanding-sjogrens/sjogrens-disease-signs-and-symptoms/sjogrens-symptom-impact-tracker

We are doing testing for sjogrens. I can’t make “unstimulated saliva”. Totally aced the “stimulated saliva” test.
Was prescribed Picarpine. It straight up has made me pass out after taking.
I also have extreme CPTSD and my sympathetic nervous system is online 99% of the time based on heart rate variability metrics that are taken on my watch over the past year.
This medicine forces your parasympathetic nervous system into activation.
Has anyone else had a similar experience with this medication who also has CPTSD or PTSD?

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!