I’ve been having low grade fever a lot this year which led me to go for autoimmunity test and further diagnosis with sjogrens….im on hcqs mtx and main medications already but I’ve been running low grade fevers still…/today it’s been especially high so I’m thinking of getting a blood test done but want to know is that even going to be helpful to understand what’s going on inside whenever I feel like trash..?

I’m a 20 year old male with likely Sjogren’s. My main symptom (other than fatigue) is dry eye. I have a schirmer score of 0mm in both eyes.

I see a lot of people complain about needing to use artificial tears too frequently… but I genuinely don’t even understand the point of them. Sure, my eyes feel good for a few seconds if I put some drops in and keep my eyes shut so they can bathe in the lubricant… but that’s it.

After a few seconds, my eyes actually feel even worse, as it feels like the drops are evaporating and taking all moisture with them. I suddenly become super sensitive to any wind or air touching my eyes

Is there anything I can do if I’m already at this point? Do I need punctual plugs help to keep the drops in longer? I’ve tried Restasis and am now on Cequa, but I’m not sure if there’s really anything else to try.

So this is a follow up to another post I made about this topic but want to give more context.

Male, 25

So before all this I considered myself in perfect health and my usual bloodwork at the doctor reflected this only a year ago. But I did have a couple of things I considered a bit strange but we're so mild I thought nothing of them. So, I've always seemed to get fatigued more easily than my peers. Not crazily but noticeable. Being wiped out energy wise after school or after work has been common for me for years. I always attributed this to the fact the socializing is always a bit taxing on me and I'm kinda high strung and get stressed or irritated easily and the fact I dont think I've slept 8 hours since I became a teenager. Then around a year or two ago I developed some strange symptoms. After the work week, my first day off without fail like clock work, I would have dry irritated eyes that felt gritty. Now i work outside in the elements and always attributed that to dirt build up since rubbing them would seem to produce something gritty from them but it was a strange sensation that would last all day and be gone by the next morning. I also got to where standing up too quickly would give me a head rush (light headed) and make my heart rate go up. Would sometimes see sparkles. This all seemed to be slightly low blood pressure but at the doctor it was always normal (if on the low side of normal). Then I developed something really strange. I would get these spells where suddenly its like my breathing felt out of sync and where I felt like I had to force the air in to get a good deep breath. I'm not asthmatic. My doctor attributed this to anxiety and hyperventilation and made sense to me at the time but I realise that it seemed to happen completely randomly and despite efforts to calm and control my breathing, these spells would last for a week or more sometimes and then just go away on their own. Sometimes my chest would hurt slightly from having to force the deep breath. All of these were minor enough I wasn't greatly worried and ignored them.

I've also been prone to tension headaches my whole life.

Okay so, about 2 months ago, I was prescribed and took iver-mectin 12 mg. Looking back now, I didn't think of it at the time, the first couple days after my first dose, I started having strange slight tingles and peripheral neuropathy and waking up with a very dry mouth which was unusual for me. Then, less than a week after that first dose, multiple lymph nodes in my neck suddenly swole up and BURNED. After that one in my armpit swole up. Also had similar burning pain in the lymph node locations in my chest (my chest hair even fell out where they hurt). These remain now. For about 2 days I felt swelling and pressure in my cheeks to where my teeth felt pushed tighter together. Could not be seen from outside just looking at me though. Had swelling behind ears as well, pretty much gone now. My doctor even said my spleen was enlarged when I went to see him for these symptoms. Then came intense fatigue and vertigo spells that would come out of nowhere and last sometimes upwards of an hour. Then I'd bounce back and be totally wired. Lasted for a couple weeks. My skin all became very dry, itchy, sometimes burning and sensitive and have slight rashish places on neck, torso and arms. This remains as well. About 3 weeks after first symptoms I suddenly had multiple sores in my mouth (inside lips, on lower gums and one at back roof of mouth) that lasted for about a week, very painful. I have the occasional sensation of slight sore throat with no visible signs. Aches and pains everywhere. Strange feeling in limbs of blood rushing to them yet falling asleep at the same time. Limbs fall asleep easy too. Lower back pain. For the last 4ish weeks id say, I've been severely constipated. Most laxatives have little to no effect. I often don't even get the urge anymore. When I go it's usually dry and hard and I have to strain (I sporatically get softer easier stool more often now so maybe it's improving.) I drink lots of fluids like I always have and now I urinate not only very often but it seem like what I drink goes through me extremely quickly. Its like my body isnt absorbing moisture.
I still have very dry mouth at night and its definitely noticeably drier than it use to be during the day. Its been that way at night since this started but daytime dryness has come and go. But is dry now. Very dry lips as well, we're cracking open at one point. Severe depression, anxiety and adhenonia as well. No true fever from head but feeling feverish and like systemic inflammation. Swollen lymph nodes in armpit temp has been in 99s when hurting however.

For context I had reason to believe I had contracted something else at this time (and have since pretty much ruled that out with my doc) and have been under an extreme degree of stress this whole time.

As far as I know, there's no history of autoimmune disease in my family but can't say for sure.

What do you all think of this? My symptoms before the medication and after. Does this sound like a remote chance of sjogren's? I'm greatly concerned.

anyone have OLP? how does it manifest for you? were you able to get it under control

Last week I started getting a stabbing pain /electric jolts in the top right of my head and my ear out of nowhere that lasted for hours making me wince in agony. My scalp felt electric and extremely tender. It eventually faded but the scalp tenderness stayed and the jolts have been coming and going ever since.

My doctor was unsure and temporarily advised to up my dose of Gabapentin from 600mg to 900mg a day which has eased the pain levels but I feel so woozy and tired.I am not going to be able to work like this but I am worried that the intensity will come back when I lower the dose back down.

Has anyone else had this? I am confused about what happened and doctor isn't sure of cause either.

Anybody else get this? Sometimes I’ll be eating a muffin or a sandwich and my mouth/tongue gets soooo fatigued that I consider just giving up.

I presume it’s due to the lack of saliva to break down carbohydrates.

Does anyone always feel sick in general with sjogrens like do you ever just feel you have poison running through your body with low grade fevers and migraines? Do you ever feel like you’re coming down with something everyday but nothing ever happens. I have felt like this for weeks and months. Sometimes it goes away for a short time but always comes back. I just don’t know if what I’m feeling is related at all to sjogrens. Maybe not but I’m curious. My lymph nodes have been swollen since 2014. They hurt too and it radiates in my jaw and ears making me feel worse. I feel like I’m dying

So I've seen quite a decent few people on here claim that after using certain medication (Accutane is a common one I see) that is when the sjogren's seemed to develop.

Has anyone experienced/heard of/think that the same could have happened from the use of iver-mectin? (Sorry I know against the rules but please humor me) I wouldn't think so since there were some studies in using to help treat sjogren's but just wondering your thoughts if you think it's a possible original inciting trigger.

Has anyone had their inner cheek on one side become noticeably swollen compared to the other? What's causing this? Will it go away?

I just took one dose of 30 mg. I had a migraine the past 3 days. Nothing unusual except its severity. I think it made it worse. Woke up with a worse one like a bat hit the right side of my head. I put in a call to my neurologist and I didn’t get a call back. The past two day it was in my eye like a knife like pain and left facial numbness. I have Atypical Bilateral Trigeminal Neuralgia and my Nuerosurgeon doesn’t want to get involved in pain management and neither does my PCP. 😳 I was given this by my Rheumatologist and he’s scared of me and said he’s going to Dr. conference in Washington DC to ask others how to treat me because he’s never seen anyone present Sjoren’s as me. :((( I had a brain Right MVD 6/19/24 and left 8/24/24 and my Nuerosurgeon thinks Sjogren’s caused damage to my Trigeminal nerve. My ears have been full since after my 2 brain surgeries 6/30/24 they hurt and I’ve had blood clots pulled out of them. I can’t get an appointment to see an ENT until 12/12 despite others specialists begging to push me up. Anyway does anyone think the Cervimeline could be making my migraines worse? I am also diagnosed with migraines and TMJ . The brain surgeries stopped the electric shocks to my face. But not the numbness , facial pain , teeth pain I mostly consume my nutrition through a straw I can’t chew food . Thank you for getting this far. I saw over 30 doctors and it took 4 years to get an official diagnosis of ATN by then I diagnosed myself. I know you’re not doctors but I’m getting any answers from mine. So has anyone experienced worsening of headaches or migraines on Cevimeline???? Sadly I took 1 pill last night and I had salvia like a normal person it was beyond wonderful. Thank you for reading this. To clarify I had the migraine before I took it but I think it intensified it …????

I was diagnosed back in February, but went undiagnosed for almost 10 years. On hydroxychloroquin and also have hypermobility. Otherwise healthy individual.

Lately I’ve been waking up so sore in the mornings and middle of the night. I feel like the aches are what constantly wakes me up at night, and no sleeping position helps. Once I get up in the morning, it slowly goes away. The aches are primarily in my torso and literally feel like I got beat up the night before in that area. Wondering if this is sjrogens or my hypermobility? And what’s weird is it’s not every night. Sometimes it’s consistent but then will go away for a few days.

I have a follow up with my rheumatologist later this month but wanted to see if others go through this. Starting to look into CBD or even food tracking to see if maybe that affects it.

Although it helps with sensitivity, I think it's making my mouth dry..

My teeth have become very sensitive and I'd like to try another toothpaste that I can get from the supermarket but not sure which. The only other one I have at home is an oral B whitening one and it caused teeth sensitivity as soon as it touched my teeth this morning :(

Do the areas mentioned in the title feel weird for anyone else? I notice it when I move my tongue around my mouth.. And it's worse on one side of my mouth. Is this Sjogren's related?

(M,30) My rhumetologist wants me to switch from hydroxychloroquine to chloroquine. He also wants me to start taking Wellbutrin. Anyone take these medications? How did they work for you? Any side effects? Experience? I have to let him know on Monday on whether to switch over or not.

What do you all do during a flare up of severe pain? Chostochronditis is hitting me hard too…every single part of my body feels like a scale of at least 7/8.. I am used to pain, but this is becoming more frequent.. I had extra prednisone so I took 20 me yesterday, and today… I left a message for my doctor to prescribe a pack with the taper… no return call 😭😭😭 I also have fibromyalgia which is a double whammy… the good thing is the prednisone did take 75% pain away from my hands… I have a heating pad in my upper back, and throw heating blanket on my legs/chest… its 4:30 am, and I am awake once again 😞😰😵‍💫

Did anyone experience weight gain with this medicine kinda afraid to start?

I've been lurking here for a little bit trying to read up on any knowledge I could find before putting anything out there. I've been seeking a diagnosis for a year now. SSA and SSB positive. I've been warned that the rheumatologists in my area are garbage with any autoimmune conditions, let alone Sjogren's. I had this test run at a facility that isn't connected to my primary care doc (This rheumatologist looked at my positive antibodies, SSA, SSB, Smith, and Jo-1, and suggested my issue was childhood trauma, so I obviously wasn't going to get anywhere) hence why I can't use it with my current rheumatologist (not like he would care either). Quest Diagnostics is in charge of running the tests. They have tried to run my antibodies 4 separate times. And every time it says it can't be processed due to possible interference. They however, cannot confirm what is interfering, if there is anything even interfering at all. Has anyone here had anything similar happen with the specific antibodies test? It very well might be just the quality of care where im located, but this seems bananas. Especially because they cannot confirm what's causing it or why it's being rejected.

I have been pressing my primary care for answers. I have asked for a referral to an ENT for a lip biopsy since Quest has been unable to help thusfar. I just got the failed results back and am waiting for my doc to check in and confirm a referral or some means of getting me to where I need to be.

Thank you all for having this here, it's been incredibly helpful to look at information from others and having some perspective on how to better advocate for myself and get different means of testing for a potential diagnosis. If anyone has any ideas or advice, I'm all ears.

Anyone with Sjogrens experience ear pain post tooth extraction ?

I (32, F) was initially diagnosed a few years ago after two episodes of high fevers. I am not on any treatment, have minimal dryness signs, but have pretty significant back pain and fatigue that my rheumatologist has mostly brushed off. Because of this, I’m not really well versed in all the potential symptoms.

Last night I had chills for ~12 hours with no fever, pretty bad nausea this morning, and today it felt like the non-existent fever broke and then I was really sweaty. Since then my joints have been so achy, which I attributed to the chills.

I can generally deal with my day-to-day and haven’t decided to start medication, especially because my rheumatologist hasn’t been very supportive. But after today, if this is potentially a symptom/flare, I may be more inclined to consider/push for treatment or a second opinion. Does this sound like symptoms anyone else has experienced??

Hello everyone,

I’ve (f22) had symptoms for almost 3 years now and was diagnosed this year and i’ve just been in agonizing pain and it’s getting to the point I can’t sleep and working is miserable. For those that are on disability, how did you know it is time? And what was the process? I’m at a point where I can’t even get out of bed.

So, it's quite a looong story

Male, 25. About 2 months ago I had a sexual encounter. About a week after I started experiencing what, up until my 45 day negative test, I fully believe to have been acute HIV symptoms. I'm not certain I'm out of the way on that front but it's very likely I don't have it now. Unfortunately I'm still unwell and have no cause for my symptoms and my doctor hasn't been much help. Someone please tell me if this sounds like sudden onset of sjogren's?

So, about a week after mt encounter (I know you don't "catch" sjogrens but stil the timing of this was so strange) I started getting barely noticable slight twinges in my armpits and groin and slight neuropathy feelings in my limbs (tingling mostly but also the sensation of them falling asleep quicker and more easily than before.) I also felt very slightly feverish and noticed my mouth was kinda dry in the mornings like it never has been before. Then my lymph nodes in my neck and under my jaw swoll up noticeably. Not huge or bulging out but noticeable. That night they then began to hurt. It was an awful burning sensation. That same feeling then spread to the nodes in my chest (and where that pain occurs my chest hair has since fallen out in patches) and in my armpits and groin. These feelings have come and go since and nodes in neck remain swollen.

A couple days after the neck ones appeared I had the feeling of swelling in my cheeks and face. It could not be seen from the outside but it was enough that it made my teeth push tighter against each other. This only happened briefly and for a couple days spaced out.

Since then my skin has all dried out badly and often feels irritiated and itchy. I have very slight reddened and raised rash on neck, torso and arms that comes and goes.

From about 1 week to 5 weeks after my symptoms began I was quite fatigued but it wasnt constant. In fact it would often come on suddenly and be accompanied by intense vertigo and these spells would last sometimes for over an hour. This has since gone away thank God and only seem to have slight fatigue from the poor sleep this has all caused me.

I also had a mouth full of canker sores that came on suddenly and lasted over a week that have gone and not come back again, thank God.

Now one of the worst parts of all this, though shortly after this began I had diarrhea for a couple days (again another thing that made me fear HIV) for the last at least 6 weeks I've been badly constipated. Ive taken fiber and multiple laxatives that usually don't seen to help. I often get no urge to go at all and when I do I have to strain. Usually when I go it just comes at random and usually at least starts quite hard and dry. I was very regular before all this. My mouth is still extremely dry at night and sometimes during the day. I drink a lot of fluids and urinate often but its almost like my body isnt absorbing much moisture.

I can still cry (I've done that a bit since this all started, ive been extremely stressed and depressed since all thia and have severe anhedonia) and I do produce some saliva and can do it intentionally.

I truly have no idea whats wrong with me. I was perfectly healthy before this and had no symptoms of the condition before other than VERY occasional slight dry eyes. My symptoms seem to match this very well but the way they came on suddenly after my sexual encounter (and I wasn't stresssed at all until my symptoms began) makes no sense to me. Doc tested me for EBV and was negative by the way.

Does anybody have any thoughts? Do these symptoma make any sense for this?

Hi all, does anyone suffer with burning lips? Mine aren’t particularly dry although my mouth is, but my lips, they constantly have a burning tingling/cool sensation which sometimes radiates to the tip of my nose. Especially my top one. It comes and goes but it is there 90% of the time!

I’ve been diagnosed with Sjögrens almost two months ago. Since then I have been slowly learning about some symptoms that I could get and want to prevent.

Recently I found out about the possibility of any organ in my body calcifying. Fun! This week I keep thinking about turning to stone - first I thought of Medusa.

I’ve also been thinking about the well known dialog from Pinocchio, with a little twist: „Geppetto, I want to stay a real boy“

Then today I thought of the embalming process of a mummy. This one I really don’t wanna think about.

Have you had thoughts like this? Who did you think of?

I feel like I've tried everything and my lips are still terribly dry, cracked, and peeling. I drink A TON of water and run humidifiers, and for topicals I use lanolin and Aquaphor. Aquaphor alone used to help me enough but no longer. What have you found helpful?

How many of you'll have hypermobility? I know we all have body pain, but a lot of my pain comes from the fact of being hypermobile. And the Sjogren's definitely doesn't play nicely with this condition. The two together make it feel so hard to manage body pain.

Oh and then fibromyalgia is the final point on the pain wheel to just keep it turning! 🤣

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.

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I’m (28F) certain I have other issues since my joints sublocate for zero reason, but does anyone have any tips for helping with joint pain? I can’t even hold down a full-time job because of it, and at this point it’s embarrassing. I feel like because I’m on the younger side for chronic illness every boss I’ve ever had doesn’t take me seriously at all. I’ve even tried filing accommodation forms but they got ignored. So my next bet is medicating with anything over the counter!

Hi Everyone,

I am putting together a survey of people who have Sjogrens and severe dry mouth symptoms. I work in medical device development, and a dentist (who treats patients with these issues as well as suffers from it themself) approached me to help look for solutions. If you have 10-15 minutes, please offer some feedback and insights in this survey.

The only information used would be the answers provided. Your responses help us understand the avenues and means to best service people dealing with these symptoms. Getting a survey of a few hundred responses can be challenging, but very valuable in these processes. The gathered information will not be shared/distributed. Contact information is optional, and would not be used for regular marketing emails/reach out.

When possible, and if you'd like, we can let you know when something becomes available. We will work with insurers to make a solution that is of no out-of-pocket cost.

Thank you

PRP (Platelet-Rich Plasma) injections have been suggested in some studies as a potential method to improve tearing (https://pubmed.ncbi.nlm.nih.gov/29970389/).

I know some clinics offer this treatment.

Has anyone had experience with this for severe dry eyes? Any feedback would be appreciated.

Yesterday was an insane day. My house was filled with the bride and bridesmaids, various family members, and a six month old yesterday as we got ready for the outdoor wedding.

It was chaos and I did not use drops as I should have. Then at bedtime, I crashed into bed and didn't do my gel drops. That will teach me.

I'm just annoyed. I'm achey, exhausted, may regret all the activity later (today Is arest day - i also have RA). And my eyes look like this. Sigh.