Welcome! For me it was the extremely extremely dry mouth and eyes!
Waking up in the middle of the night with the dryest mouth ever...like the Sahara Desert, desperately needing a drink, choking because my mouth is so dry. It happened 2 or 3 times a night.
Definitely my mouth and eyes.Followed by swelling of my joints and fatigue. I also have Lichen Planus and MCTD. I'm in a flare right now but pushing myself to go to work.
Me too, all of the above
Dry mouth. Salicylate intolerance.
What is salicylate and what has it?
Waking up in the middle of the night with your eyelids stuck to your eye balls
oh so annoying to say the least :(
I actually had to pry my eyes open this morning!!
Yup....morning exercises now involve unsticking eyeballs!
This was my red flag! And quite extreme! Some severe dry mouth would have been a lot less painful
Absolutely the worst!
I've never experienced that!
Standifer you are blessed!
it seems the blood test don’t always prove the condition..
Another well proven point
I've been tested for RA, lupus and currently they're trying to rule out/in MS. So frustrating not knowing what's wrong!
I wondered about the blood test? My Internal Med. Dr. said my blood test was negative. (My eye Dr. thought I could have it, damage to the whites of my eyes and burning mouth/tongue etc..). He said it could be my thyroid. I am hypo and fibro, swollen neck glands. etc..
Standifer i was initially misdiagnosed with RA so that’s how it presented after a lifetime of dry eyes and mouth (only tip of iceberg for me). Then it morphed into a really good imitation of MS - including white matter on brain and paired bands in spinal fluid. And that’s where it’s stayed. But sadly we don’t get the support or clinical trials, awareness or understanding that those with MS get. Otherwise mine presents in much the same way.
I was diagnosed by strongly positive ANA, raised IgG, inflammation markers and 100% positive lip biopsy.
Sjögren’s can appear as anything it likes - but I would say the one most defining symptom for most if not all is severe fatigue.
If the blood test is positive does it mean you definitely have it?
There is ANA test they take first and most people with Sjögren’s are positive.
If you are then that has certain patterns. ANA and Rheumatoid Factor being the main ones plus high inflammation in blood are often signs of autoimmunity plus raised or low immunoglobulins. Then there are more specific antibodies RO and LA for Sjögren’s and if you have these with Sicca symptoms that is fairly conclusive. Otherwise you shanita be offered a lip biopsy and that is pretty definitive. If everything is negative then you probably don’t have Sjögren’s - definitely can’t be diagnosed with it.
It's important to remember that's everyone is different, so what maybe the worst symptom for one person maybe not so bad for another , for me my mouth is very dry but my eyes aren't so bad . With Sjogrens I believe that it tends to attack anywhere in your body that produces moisture so eyes, mouth , vagina etc . There are lots of peeps with gastro issues also . It also can cause inflammation in your body and crippling fatigue . Best thing is to speak to your GP who can run some base line bloods and then refer on to a Rheumatologist if needed . Good luck
I agree, great response! Looking at the symptoms, this syndrome matches me like crazy! I have extremely dry mouth all day long, my eyes burn but not to the point of sticking to my eyeballs
I have it with Hashimotos. My Endocrinologist told me this week that autoimmune disorders often present in Two.
Standifer that sounds pretty much like mine. I have Hashimotos rather than Graves though.
Hugely swollen parotid glands.
Waking up chocking every night
I’ve never had eye or mouth issues. For me it was extreme joint pain that lead them to start investigating.
That was my first symptom
Yes! Extreme joint pain, muscle fatigue to where I walk two steps and my legs burn and I start feeling like I need to take deep breathes but can't and I get numbness waves in my face
Mine started with weakness in legs and progressed to dry mouth and eyes
I would say extreme fatigue and joint pain and or weakness. I have dry mouth and eyes but those symptoms didn’t really stand out to me as the fatigue and just overall not feeling good did.
Omg the fatigue is so bad! They don't recognise that enough!! How do u manage it?
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stephani thanks so much!! Yes I refuse to live like this or to just adapt around it... like I understand we have to change our lives a bit around chronic illness... but I can't work when I'm like this? I've tried everything naturally available to me. Everytime they want to talk me out of meds they tell me I'm depressed... when I've been hand balled off to the psychologists and psychiatrists too many times already to know, NO I'm not insane, I just need proper treatment
Jama exactly! I always told them I didn’t have depression or anxiety until I was extremely sick and nobody could figure out what’s wrong with me! I used to feel so guilty about canceling or not being able to attend because of illness as well, and now I look at it as if they can’t understand then there not true friends anyways. Having a chronic illness is hard, having a chronic illness with no diagnosis is even harder. If you have seen many docs in your area there’s a place called Mayo Clinic, it’s the top diagnostic hospital. It took me like a year to get it in but I actually ended up being diagnosed like a week before i had an app there.
Wow! Your two stories sound very much like mine! I still haven't been diagnosed. My daughter found this syndrome searching the internet. We were both shocked at the amount of symptoms of sjogrens I have! I would say the most extreme symptoms for me is joint pain, muscle fatigue and an overall feeling of laziness. I'm being treated for depression for the first time in my life and I'm 47, I have focus issues which really stood out going back to school! I'm on ADD medication just to get through school! I have Graves disease which took my thyroid and have brain lesions that the Dr's are now trying to find a cause. I have a spinal tap and cervical mri scheduled. I'm worn out and completely frustrated! Right now my neurologist is trying to rule out MS as I match all those symptoms, as well! Been tested negative for RA and lupus
Dry mouth with gums that I have to tear off my teeth. Red sore eyes, but pink and red veins and nearly the whole eye being red like I've never seen before. Dry hands that hurt and split open easily. Raynauds (hurting red burning swollen hands and feet, blue and yellow patterns). Interstitial Cystitis was the icing on the cake though for the rheumatologist, plus dry privates.
I was diagnosed without the dryness symptoms.
What made them test you?
I had multiple things going on and just had a "feeling that something was out of whack". I didn't know what tests to ask for and GP just ran standard bloodwork. Finally a dermatologist did an ANA test and that started me on the path to finding what was going on. Good luck.
I had awful joint pain, fatigue, and brain fog. In fact my dryness is still not to point that any one would medicate for it. My eyes feel gritty sometimes. My mouth feels a little dry sometimes. My vagina, is awful. Like the Sahara.
I was just at the Dr and he was up in "there " and he said "well, I wouldnt think you had Sjogrens here" something like that.... there was a female nurse in the room!
Maryjane that’s crazy!! If it effects your mucus membranes, vagina is defiantly going to be affected, I had terrible vaginal dryness as well and my rheumatologist said it was from my sjogren's syndrome.
Coconut oil has worked wonders for me with dryness, it’s oil based so it lasts longer and it’s all natural!
I definitely have the pain, brain fog, memory issues. All kinds of stuff.
Coconut oil on the vagina?
Maryjane yes ma’am! It’s way safer than all the chemicals they put in lubes and it’s oil based so it lasts a long time, is edible, and non irritating. You can also use olive oil or crisco but I prefer cold pressed organic coconut oil
Maryjane I've been doing it !
Good to know stephani, thank you, I'm almost 40, less than 2 months away. I'm sure it will start up not long from now....
not sure what area your in but you can buy a gigantic tub of it at Costco for super cheap! I buy the big tub and separate it into containers. One for the bathroom as it’s a fabulous moisturizer in place of lotion, one for the kitchen as it’s healthier to cook with that other oils, and one for the bedroom
Near Seattle Wa, I use to have coconut oil, don't know what happened to my giant tub!!
Try vanicream products too. They are awesome.
Dry mouth and eyes
Horribly Aching muscles and ungodly cotton mouth.
Dried sinuses so bad I was in excruciating pain.
I get dry sinuses, as well, that give me a headache. Typically allergy medicine will help. Mind you, I don't have allergies or sinus problems! Lol
Standifer, they had me try allergy and sinus meds but nothing worked until i started plaquenil. Mine felt like a desert and the pain wasn’t a headache but i would cry it hurt so bad. This was when my pcp began looking into Sjogrens. Before that unbearable fatigue. I kept telling my pcp my fatigue was like walking with sandbags. I could hardly lift my arms to shower. She was saying it was my depression and weight and then after a lip biopsy FINALLY diagnosed with Sjogrens. I had nose bleeds as well. This was a period over 4 years!
Wow! I'm so sorry! I understand what you went through. I get burning eyes and sinuses and always thirsty! The fatigue and burning muscles with achy joints! Ugh! Awful! I have been drinking Keto OS for about 6 months. It's saving my life! It's the first product I've found that makes my body feel more normal with some energy. I take so many different vitamins every day and night, but my (what I call) Keto - krack helps so much more!
Dry mouth and eyes.....blood test then verdict
All mucous membranes dry. All blood tests and lip biopsy negative.
Same here! floretta, would they diagnose you based on symptoms? I have yet to meet a rheumatologist who will diagnose anything without positive labs.
Yes. Calling it sicca syndrome.
Started me on Plaquenil, which I have taken for 3 months now and hasn't done anything for me.
floretta, I also have a diagnosis for Sicca Syndrome but my doctors refuse to offer me any treatment without positive Sjogren's antibodies.
My husband has been diagnosed with Sjogrens antibodies and still there isn't a doctor that will treat him.....and he's seen all of them, from many rheumatologists, neurologists, allergists, etc. They tell him to live with it. Thank you for listening to my venting.
Celia , I have experienced the same. The rheumatologist I saw most recently doesn’t like prescribing Plaquenil because she thinks the risks outweigh the benefits. I really wish we would Golding some good research and potential treatments in the future. Has your husband considered trying LDN (Low Dose Naltrexone)? I would try it if I could get off of my Tramadol.
He is presently on Paquenil but still gets flare ups that are debilitating...Prednazone for short periods of time help but his rheumatologist will no longer perscribe it. All the specialists he has seen say he's fine..we feel hopeless. Thank you so much for for responding to me.
How does LDN help? Nobody has ever mentioned it to us.
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Thank you so much Faith.
I had a virus that caused dry mouth , I was drinking so much water that it affected my sleep cause I was up all night. I couldn't wear contact lens they would pop out from my eyes being so dry no matter how many drops I used. And my nose always had scabs or was bleeding from being so dry. I also was getting cold sores ( Virus) at least monthly. ;They started running ANA titer..
I just got diagnosed yesterday, my main complaint is lethargy and brain fog. I do have dry eyes but not too bad. Find a doctor that will run blood work. I had a positive ANA test first, then they tested me further.
A rash all over my body ,dry eyes and mouth.
I have dry mouth, dry eyes, had corneal abrasions, dry sinuses, and nose, fatigue and had chronic hives for almost a year and my blood work was normal. My rheumatologist said it was sicca syndrome and not the autoimmune Sjögren’s syndrome.
I also have carpal tunnel, diminished taste and smell. No ear wax.
that's what my rheum said I have also Sicca syndrome. is that just a lower level of the condition?
that was like in 2010
I guess that Sicca Syndrome is not an autoimmune disease and sjogren’s is autoimmune. When I had chronic hives for about a year my primary doctor sent me to an allergy/ immunologists and he said it was a autoimmune reaction. So frustrating.
Dryness eyes, nose and mouth, dryness of the esophagus and problems whih my lungs. As I have another autoimmune autoinflammatory disease which is very agressive , my systemic Vasculitis is causing so many severe but als many symptoms which could be Sjögern or something else too. There are many possible co-morbid conditions. Ah and I can’t sneeze anymore since more than two years
Mouth and eyes
Dry eye and severe eye pain
Dry mouth first, then dry eye. I also have CREST, my first symptom being Reynauds.
Dry eyes and mouth.
Trouble swallowing, severely dry eyes and dry mouth.
I had dry eyes, mouth, hair, vagina, and a positive ANA test. Ended up getting a lip biopsy. I've only been here a short while myself, but everyone had been so helpful!
I have only been here a short time and just recently diagnosed with Sjögren's syndrome. My test results came back normal so my r
This site is very helpful and warm. Nobody gets it like us!!
So far, I'm seeing awesome support! I'm still not sure if I have sjogrens, as they are still searching for my diagnosis, but I do match everything for it!
So, do you guys have constant symptoms or do they come and go? I really feel like I have two different things going on. I have the dry mouth in which I always chew peppermint gum and carry a large water bottle everywhere, and I have the painful joints and muscles but I also have sort of numbing waves that go through my head and face. That stuff I will go months without. I have been trying to get diagnosed for 5 years now! They keep chalking it up to me not having a thyroid, yet my thyroid levels are under control! Very very frustrating!
Could u have Lyme ?
Pretty positive no, but my doctor is testing me for that, as well. I need to get to the lab to take about 30 blood tests! I should do that today while I'm at a doctor appointment
I have lupus and i have samething happen
mica my doctor is currently trying to rule MS out.
Is the numbing and tingling on the face a part of this or something else?
Did they check your v b12 ?? When mines low i have that happen
I'm already dealin with Fibro & Autoimmune Hep, and just told that I have sjogren's syndrome. I've had so many different blood test done on me, I feel like a pin cushion! Lol I've dealt with the Vertigo in my 20's, Bell's Palsey on the left side of my face, about 5yrs ago Back Surgery 2yrs ago. I have trouble keeping my body temperature regulated also.
Autonomic neuropathy will affect the internal systems. ie. body temp, organs
You sound like me! Back surgery at 22, thyroid removed, bone and joint problems, as well as not being able to control temperature. I'm always sweating!
I go, hot 2 cold 2 hot! It's a rat race!
I have joint pain im tired dry skin im tired i do not have dry eyes or dry mouth so i was in shock when i was told i had it but i have lupus and now haven colon issues and other gi issues
check out http://www.sjogrens.com/
sjogren's syndrome can also be a secondary to another primary auto immune disease.
If I have it, it would be secondary to Graves disease
Dry eyes is one.....it wasnt that bad until after i was diagnosed. Now great to have a gel to relieve the dryness at nighttime. One other thing was the aches and pains. My doc sent me to an endocronologist who after 4 more bloodtests confirmed it. Now i have an appointment with a rhumatologist in a couple of months to go over all my meds and vitamins that i take.
Gritty dry eyes that are not helped by drops
Dry mouth almost impossible to quench
Some of the better, more experienced Rheumatologist will diagnose on symptoms alone. About 40% of all those with sjogren's syndrome have negative blood tests.
Everytime I swallowed I had a pain on the bottom of my tongue. I didn't have a virus though. An urgent care doctor started asking me questions then she said... I think you have an autoimmune disease.
I have that too - feels like needles?
Yes. It was my glands that had swollen so badly. Haven't had that since I started meds
Dry eyes dry mouth dry nasal passages jaw pain and fatigue just diagnosed with sjogren's syndrome and I have Autoimmune hepatitis
Very dry, gritty, stinging eyes with pain. That was the aha...I had many more symptoms before I ever thought of sjogren's syndrome though.
The thing that got me diagnosed was recurrent parotitis. My parotid gland swelled up to the size of a half lemon twice before I was sent to an ENT who then noticed my dry eyes and mouth and did a lip biopsy to confirm the dx of sjogren's syndrome. Before all of this or around the same time I was having unexplained fatigue, weakness, and joint pain. Because of this, I was tested for RA and tested positive for that. I still have dry mouth and eyes, but the other symptoms come and go. Plaquenil seems to be helping. However, I am now experiencing low back pain with limited range of motion in part of my spine.
This is helping immensely! I'm so sorry for your dx's! I understand though. I was shocked to read about your limited range of motion! I have had limited range to where my back feels locked up, in my cervical region. It feels like a locked rib. Could that be from sjogren's syndrome?!
Swollen parotid glands
Swollen glands on my heck. Hurt to laugh or smile. Dry cough.
My Dr listed me as "Keratoconjunctivitis sicca in Sjogren's Syndrome"
I had the painful joints and muscles and couldn't get out of bed one day. Diagnosed with Sjogrens after that.. A year later came extremely dry eyes and dry mouth.
Peripheral neuropathy in feet, then legs and now hands/forearms. Plus, fatigue, dry skin and achy feeling. I didn’t realize I had dry eyes or mouth until the Dr tested me because I can remember being a teenager and being this dry all the time. Just thought it was normal. Was just diagnosed in 2012.
What sent me to the doc was terrible pain all over. I laid in bed, bolstered by 8 pillows as all my joints hurt terribly. Then came dry eye and mouth. Fatigue for 20 years and a large parotid tumor before diagnosis.
Extreme fatigue, painful muscles and joints, dry eyes, then dry mouth , dry patches on my skin that keep getting bigger over the years
Nothing. Get your rheumatologist to do an ANA test ....anti-nuclear antibody test
Dry eyes, but dry mouth and other parts, and ANA confirmed it. I was diagnosed with RA first.
I would try to Golding a rheumatologist. I'm undiagnosed and am seeing a rheumatologist on the 22nd.
Swollen parotid glands. Drs. Including an ent, dentists, oral surgeon , DO couldn’t figure it out. My endocrinologist saw the selling two years in a row and said you must continue to look for an answer. I got scared googled swollen Parotid gland and first thing is Golding is Sjögren’s. I had all symptoms. Blood tests and lip biopsy were all positive.
When mine first swelled, I was told I had Mumps
Swollen glands below my ears. And around my jaw line.