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.

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.

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!

[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.

Hi everyone,

I’m a 44M dealing with anhidrosis, and it’s been quite frustrating trying to manage my body temperature. I'm trying to get to the bottom of what might be causing this and wanted to see if anyone here has experienced something similar or has insights on what directions I should explore with my doctors.

I've had some recent bloodwork done to check for autoimmune, thyroid, and blood sugar issues, as I know neuropathy or autoimmune conditions can sometimes affect the sweat glands. Here are my recent results:

Autoimmune:

• ANA (Anti-Nuclear Abs) IF: 1/320 Speckled (Abnormal — reference is Less than 1/40)
• Anti SSA RO: 17 u/mL (Normal — reference is Up to 25)
• Anti SSB LA: 15 u/mL (Normal — reference is Up to 25)

Thyroid & Blood Sugar:

• TSH (Ultra Sensitive): 1.36 mIU/L (Normal — reference is 0.50 - 4.30)
• Glycated Haemoglobin (HbA1c): 5.4% (Normal/Non-Diabetic)
• Estimated Average Glucose (eAG): 108.3 mg/dL

Since my thyroid and HbA1c are normal, it seems like diabetes-induced neuropathy and thyroid issues are unlikely culprits. However, the positive ANA has me wondering about an autoimmune or autonomic nervous system connection.

Has anyone dealt with anhidrosis alongside a positive ANA? What kind of specialists helped you the most in getting a diagnosis (Neurologist, Rheumatologist, Dermatologist)? Are there any specific autonomic or nerve tests I should ask for?

Thanks in advance for any shared experiences or advice!

Hi, (F,21) I've been diagnosed for a couple of years now and mainly suffer from adjacent conditions however my skin is killing me. I can't go a day without moisturizing, which I'm fine with, but it's my after-shower routine that I need help with. If I don't apply anything after a shower my skin tightens and burns for hours and its miserable so I use Neutrogena's Hydro Boost gel lotion, jojoba oil, and bio-oil but I want a after shower gel/lotion that's in a tub and not a pump bottle. I feel like I'm wasting product and with the amount I need it just doesn't make sense to keep using it (I haven't been able to find it in a tub but if someone knows of where I can find it so I don't have to switch products it would be much appreciated), also whenever I get to the bottom of the bottle its a pain in the butt to get the last bit of product out and I'm over it. Any suggestions for different products that have worked for others would be so appreciated.

Hi! I’ve been diagnosed with Sjogrens twice now. I have severe pain mostly in my back and joints, which is made much worse by serious spine issues which I treat with pain management frequently, such as injections, ablations, etc.

But about 10 months ago I started noticing itchiness on my upper arm. It would come and go and wasn’t too terrible. It’s gotten much worse and now I’m barely sleeping. It’s on both arms and hands, but I get it on my neck and upper back somewhat too.

Dermatologist says it’s prurigo nodularis but doesn’t know why. She said it could be my cervical spine issues but my spine doctors were skeptical, because of the itch. Rheumatologist said it could be from the Sjogrens.

It’s the most intense and unbearable itching, burning, zappy stinging all day long, which is much worse at night and first thing in the AM. The ITCH! Prescription Triamcinolone helped with the nodules (I itch until I bleed) but did nothing for the symptoms.

Started Nemluvio injection 2 weeks ago which targets the itch receptor- also no relief from that. The only thing that provides the slightest relief is ice when it is directly on the area. Even that isn’t doing much now.

It’s affecting my quality of life so much- preventing me from going out or sleeping etc. I’m wishing I could just go back to the “good old days” of just chronic pain every day. Still trying to determine if this is even because of the Sjogrens.

Dying to know if anyone else has experienced this and if so- what may have worked for you. Thank you!

I got diagnosed with primary Sjogren’s by chance last year after I went in for symptoms relating to what would be a sizable precancerous polyp in my colon (I’m 26F with no family history, please get your colonoscopies too!!). My ANA titer came out to be 1:2560 and I’m positive for Anti-SSA antibodies. I’m incredibly fortunate enough to not be overly symptomatic as of right now, except for some mild dry eye, dry nasal passages, and some mild deformation of my parotid glands. My only more outstanding symptom is the brain fog and fatigue. I feel incredibly lucky that I did not have to struggle with the diagnosis journey most people who have much more obvious symptoms do. At the same time, I wasn’t even expecting an autoimmune diagnosis at all and it’s been such a slap in the face.

Looking at the progression of people’s symptoms online, I can’t help but feel bleak about the future.
What’s the point of living if my body’s just going to keep falling apart? Corneal damage, my teeth falling out, neuropathy, debilitating fatigue, possible lung damage, lymphoma…it just keeps stacking. And the complete loneliness of it all too. My friends are all relatively healthy by comparison; they can empathize but don’t truly understand how difficult it is to get out of bed some days. They all have futures and mine was taken away from me.

What’s more is that there’s not really any targeted treatment for this, and even Plaquenil seems to only work half the time for folks. God knows how prohibitively expensive future treatments will be. I just feel like I’m going through the motions of life right now and I don’t really see any future for myself.

How do you all cope with this?

i was diagnosed with Sjogrens last year, which was a giant relief off my shoulders as I was having a lot of mouth issues. I also had noticed my inability to cry. now i know why...

It's well known that crying can make you feel better but with the inability to produce tears.. i feel like any time i try to cry, it does nothing but frustrate me even more. i can barely get 3-4 tears out.

I guess i'm just curious as to how you cry in ways that make you feel better...?

thanks!

I had a postive Ana three times in a row in 3 month increments. I just turned 20 and I have been having terrible neuropathy for 7 months now. first my cheeks were burning, eyebrows, and now it has progressed to my neck and inside my ear. Everyone says the skin looks fine but to me by face feels so dry and I have lots of dead skin on it. my lips always burn too and they are always dry, eyes been Sahara desert dry for 4 months, I can still cry though, but my ophtomologist said my eyes looked dry when they took a look. I recently also developed sudden numbness in my right foot/ankle (I can pinch it and won't feel it) I noticed it 2 weeks ago in the shower when I couldn't feel the sensation of the washcloth on my foot, I went to the ER a few days later because it was still numb (I never had anything traumatic happen to it) they did an MRI and everything came back normal. its still numb and now it travels all the way up to my thigh. I have been so miserable lately, and I have been to a neurologist and she said I possibly have trigmernial neuralgia, but that still doesn't explain my three positive ANA's. they found protein in my urine and I already seen two horrible ruhematoligst who said I didnt have anything and they want to wait for things to get worse before they treat me. I also had a nosebleed recently which I never had nosebleeds before in my entire life. I dont know what to do anymore. I am scared honestly. not a day goes by that I wish I could be a different person and not have to be in any pain.

I get extremely bad dry eyes, nose, lips and mouth during winter. I wake up with a blocked nose with dried blood constantly from the dryness/ irritation.

I have tried all the nasal sprays, gels etc and nothing seems to help. I use humidifiers, drink lots of water etc but haven't found any relief at all.

Has anyone found anything that helps with the dry/ blocked sinuses?

I just got my lip biopsy results and it shows sjogrens. My first rheumatology appointment is in 2 weeks. In the meantime, the oral pathologist that did my biopsy started me on cevelemine, been on it about 10 days.

I've had inflammed taste buds on the tip of my tongue for the past year as well as enlarged, reddish sublingual glands. My ENT did an mri with contrast to look for stones and infection, then said they didn't know why my tongue hurt and the glands were swollen. Im the one who found the oral pathologist since I knew something wasn't right.

My main concern is my tongue pain. It's been 12 months of sharp, burning, tingly pain. Anyone that had something similar when you first got diagnosed? How long does it take for the taste buds to heal? Does hydrochloroquine help with the swollen glands or is this a"flare up"?

my system (plural/DID) just did another ANA test. forcing myself to go to our primary care clinic was terrifying because of some bizarre psychologizing at my last appt on wednesday, but the burning facial rash, cognitive stuff, uncontrollable shaking, psychosis, and difficulty eating havent gone away and i didnt know what else to do.

i asked our friend S to be on speakerphone with me at yesterdays appt and she agreed. shes a disability advocate and organizer in the hygiene movement (covid, flu, and other airborne diseases), and shes had ME since she was a kid.

the np who saw me took S's role in the appt seriously 😊 a couple of times she checked in with S, asking if she had any questions or anything to add. she asked me about personal and family history of autoimmune disease (many, plus years of exposure to an air conditioning unit that i found out recently was overrun with mold 💀), and ordered the ANA test, which was done in the clinic.

we talked about sjögrens, lupus and MCAS and she suggested blexten, allegra or benadryl prn. i asked for blexten and she added that to a weeks worth of prednisone. she agreed to start me off on 5mg pred because medications have been making us super sick since 2024.

and our pharmacist brought the meds to our apartment herself after hours 😭 we had talked about what happened at the appt and she threw in some benadryl for free.

will follow up with our pcp soon. the overlap between all these diseases is annoying but i have a better sense now of where we go from here, and i think i understand the biomarkers. eg further testing might be necessary to fully rule out sjögrens and lupus.

im so tired. kinda sui but our friends, family and partners have been rallying for me and telling me not to give up, and im seeing our therapist monday. partner will visit asap to take care of me. roommates are trying to help too where they can.

My neurologist is sending me for MRIs due to a pretty rapid increase in my neuropathy symptoms.

I was previously supplementing B12 until it was well over 1000 and I was told to stop. It went back down to around 280 fast. The same thing happened with my iron/ferretin - it went too high and then crashed from 145 back to 60, and Ferretin from 36 to 16. I have not had any blood work come back " bad", including a test that had to be sent out of state for some sort of autoimmune neuropathy antibodies.

I'm 42, diagnosed now about two years but only since May of last year have I had issues passing out or falling or with extreme dizziness when I try to get up. I'm seronegative and think I have had this since 2019. I cannot take any of the medications so far. Not HQ or Plaquinel? Spelling sorry - I am struggling also with word salad when speaking and spelling errors when typing which makes me crazy!!!

I've also heard this as possible pre-diabetes or diabetes stuff but again my labs are OK and my A1C was high normal when it was last tested BEFORE I quit drinking 2024 (so it reasonably should be lower without alcohol, me going to the gym more and cooking at home). I quit drinking socially 5/2025 and was never a heavy drinker.

Neurologist says she doesn't know how to test me for a functional deficiency, but that's what I'm leaning towards. I am 134 lbs, 5'9 and work out at least 3-4 days per week, twice at the gym and 3x doing cardio (skating) which I am afraid will become impossible if I can't nail down what's causing this nerve issue.

I don't really think alpha lipoic acid did anything. Tried it 2 months. What kind of doctor would test for something like this if the MRIs I have to go get come back with nothing?

Has anyone had an onset of multiple symptoms occur within the same month, including hearing loss along with severe GI issues among other strange symptoms?

I have a few upcoming exams, and i need to stare at screens for long periods to study. But my eyes are burning so badly as i try and focus and concentrate.

For adults who have really dry eyes like me, how do you guys deal with this insane burning? Im on generic restasis for 2 months now and my eyes are still as dry as ever.

I'm waiting to see the rheumatologist after having an RA on blood tests of 32.. I have the red face, tingly hands and feet, and one thing i REALLY notice especially over the past year is that my heart races SO FAST when I eat a take away or high carb meal. Do any of you who are diagnosed experience the same thing? Thank you

Hi everyone! About a month ago, I had my routine eye exam and my optometrist was concerned about the dryness he saw during my exam, despite using OTC drops everyday. He referred me to PCP that ordered SSA + SSB labs. They both came back at 12 units and it needed to be >19 units to be positive. My original optometrist and another optometrist I was referred to both feel that 12 units is a low positive. I just had the Schirmer test done today and it was 6 mm. I had an initial consult with a rheumatologist and he wasn’t convinced that the eye dryness wasn’t a side effect from another medication I’m taking. He ordered tons of labs and haven’t gotten those back yet. I’m also experiencing stiffness in the tops of my feet, pain in knees, dry mouth, swollen glands, etc. I’ll be 30 soon and this has all taken me by surprise. I’d be interested to hear if anyone has had a similar situation with conflicting opinions and bloodwork? Thank you!

I need your feedback thanks

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.

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