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A Rheumatologist Explains: Sjogren's Syndrome

Connected Rheumatology

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It can take up to 3 years to finally come to a correct diagnosis of Sjogren's Syndrome. What is it? Why does it take so long? Learn everything you need to know about this common but misunderstood condition here!

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⏱Time Stamps:
0:00 Intro
1:06 Is this you?
2:28 Sjogren's & the glands
4:04 Common Sjogren's symptoms
7:07 Primary v Secondary Sjogren's
9:29 Why is making a diagnosis so confusing?
13:09 What you need to know about Sjogren's & Lymphoma

**Please note - we do not provide medical advice, opinions or diagnosis via email, phone or social media messaging.

About me:
👩🏻‍⚕️ Hello! I am Dr. Elizabeth Ortiz and I'd like to thank you for stopping by Connected Rheumatology. I am a board certified Internist and Rheumatologist with over 18 years experience practicing Rheumatology and am passionate about teaching & empowering patients to partner with their doctor.

We discuss all things Rheumatology, Immunology, Diet & Movement & Mental Health & Wellness because we believe IT IS ALL CONNECTED!

* The information in this video is not intended nor implied to be a substitute for professional medical advice, diagnosis or treatment. All content, including text, graphics, images, and information, contained in this video is for general information purposes only and does not replace a consultation with your own doctor/health professional. Any comments and/or recommendations made in the comment section by anyone other than Connected Rheumatology does not reflect the opinion or recommendation of Connected Rheumatology.*

20 Comments

@lisaduncan3772 4 years ago

I have Sjogrens and now have Lymphoma. I have been diagnosed for about 30 years. My rheumatologist in Atlanta was so wonderful. I had both the A and B results and my doctor was so excited to get those results that I thought he would start dancing! Not that he was glad but that he could say YES, this is what you have. I have nodules all over my body and in my lungs. I have water with me all the time. A good test if you suspect your dry mouth could be Sjogrens is to eat a saltine cracker. My mouth is so dry that I cannot do that without water or a drink to wash my mouth out so I can swallow. My Lymphoma started in my Thymus gland and went down my esophagus, as well as covering my heart. That was nine years ago. My salivary glands were so swollen and the pain was terrible. My Rheumatologist referred me to an ENT where they put a instrument in a place inside the mouth where they could pop the swollen parotid glands. Think the sharp shock you may have when eating a sour pickle. It was that, times 50! The actual procedure gave me relief and I was put on an antibiotic. Sorry for the length of this but if it helps one person, that’s my goal. 😊

@kristingentry7887 4 years ago

Oh, dear. 100% of these symptoms are the boxes I’d check. Time to be proactive. I’m 69 and I’m really tired of watching my life go by. And, I’m just really tired. All the time. First time listener. Liked. Subscribed. I’ll be back. Thank you!

@garyandkathleenaugustine5225 3 years ago

I was diagnosed with Sjogren’s and have started to feel the symptoms more now that I’m 71. I have a swollen tear duct in my right eye, skin rash, arthritis, neuropathy in my feet and hands, acid reflux, cough, dry mouth, Raynaud’s Syndrome, and fatigue. I get skin abscesses on my inner thigh once in a while. Chronic depression kind of goes along with it. What’s amazing is I look perfectly healthy. Kathleen A.

@jacquelinekolaj5922 2 years ago

Small Fiber Neuropathy should be discussed when discussing Sjogrens. Sjogrens causes this, I would know because I am one of them.

@MissRicci-q3c3f 1 year ago

I had 13 years of severe symptoms of Sjrogrens before I asked to be tested with it because I figured it out myself because no medical professional was going to

@HolyHell2020 3 years ago

I've had such horrible dry eyes and dry mouth for years that my vision is gone and my teeth are in terrible shape I need dental surgeries. I've also had the tell tale butter fly rash, joint pain, debilitating fatigue, etc all my life since I was a teen. My eye doctor in NV suspected Sjogren's and I have not been able to find a doctor since moving back to the Midwest who will run the tests or take me seriously. I wish more doctors were as passionate as Dr. Elizabeth! Thank you doctor for the wonderful, informative video!

@amycullimore1639 2 years ago

Great information but am disappointed you haven’t mentioned the gut manifestation of Sjogren’s. It’s a pretty unpleasant symptom to manage.

@sonja9191 1 year ago

No amount of eye drops helped my dry eyes. Since Sjogrens attacked my tear ducts causing extreme dry, gravely eyes, my body then responded with paradoxical tearing. (Excessive watery, runny eyes during the day.) But these watery tears are not the kind of tears that we need. They were lacking oil and mucus needed to lubricate my eyes. So I ended up getting punctal plugs! Wow…what relief!!! No more waking up in the night with my eyes feeling like a dump truck filled them with sand and gravel.

@helanagiordano 1 year ago

I have Sjogren’s and definitely dry eyes, lots of fibromyalgia joint type pain. I suffer terribly.

@jenf7309 3 years ago

I have all the symptoms, also very dry sinus cavities, but negative ANA test 😒

@Teresa-K 3 years ago

I’ve been diagnosed with fibromyalgia and Sjogren’s disease. This video explains why my rheumatologist does a blood test every 4-6 months and other valuable information. Thank you.

@vickisvicki 3 years ago

Sjogrens showed up on my blood work 3yrs ago and I'm just finding out about now🤔

@BarbsCraftStudio 3 years ago

We need good Rheumotologists. I am on my third one and at the point where I don’t even bring up issues because they don’t think my chronic pain , fatigue and nerve symptoms are related to my Sjogrens diagnosis. The latest doctor if my blood work is fine dismisses my concerns and states it is fibromyalgia. I haven’t had a pain free day in more than a decade. Thankfully the pain is low to moderate but daily pain wears you down. I think the bigger reason patients avoid the Rheumotologist is their concerns are dismissed.

@royhill9802 3 years ago

My wife has Sjogren's. The most relief from her dry eyes has come from Scleral contact lens. They are custom made to fit your eye balls and they hold fluid to reduce the dryness. They are very expensive, about $1,000 per lens, but if you are in pain from dry eyes, they are well worth the money. They must be fitted by a specialist. It takes about 3 or 4 pairs to get the fit right- hence the high cost.

@marcydobbs1653 1 year ago

Don't forget psoriatic arthritis as autoimmune disease. I have rarely had a psoriasis rash, but I have PsA, fibro, dry eye, and secondary sjogrens.

@Angeline33540 4 years ago

Sore throat, joint pain, the first thing they assume is that you have covid, Cant even see your doctor to assess you properly. I'm so miserable and depressed.

@agnestremblay4237 1 year ago

My Life is HELL.

@shelleyfleer9895 3 years ago

I have Sjögren’s since 2007. My first diagnosis was fibromyalgia in 1997. I did not have problems with eyes and salivary glands until later. I presented to my Rheumatologist because I would get low grade fever and uncontrollable chills. It was many years before salivary glands and eye dryness came about. The fatigue is unbearable. The dry eye is almost too much to deal with, but have found l “Low level light therapy” that works quite well.

@jenifergarcia1566 3 years ago

Could you please do a sub-segment on the neurological aspects of Primary Sjogrens? Small Fiber Neuropathy (and the extreme severe disabling pain that it can cause - not just tingly fingers—and Poly neuropathy and length dependent neuropathy?