April is Sjögren’s Syndrome Awareness month. This is the autoimmune disorder that has caused so many complications for my husband…including the last couple of months of surgeries and hospital stays he had. He had a total of five surgeries between Christmas and the end of March which included a total of three weeks in the hospital and so many outpatient trips to the hospital in DC because our local hospital was not equipped to deal with the specialists he needed.
Right before Christmas, he had developed severe jaw pain and swelling. A telemedicine urgent care visit with the insurance company a few days later had the attending doctor telling us to head to the ER as soon as possible. CT scans discovered that he had developed an air filled abscess infection that was rapidly progressing and endangering his airways as it was beginning to wrap around the base of his jaw and around his throat. It needed to be drained as soon as possible.
The specialist up in DC told us that the Sjögren’s had caused a block in his salivary glands which combined with his diabetes created a perfect storm for an infection to form. Warning, the next images are pretty gruesome…
He spent two weeks in the hospital…missed New Year’s and our 20th Anniversary…so many COVID tests! Since the pandemic was happening, visitors to the hospital were restricted. So he went though all of this alone.
After he was released, his first follow up went perfectly and the doctors were very happy. Unfortunately, pain and swelling were back a week after that and he was admitted for another week’s stay in the hospital for more surgeries…he was released the second time with daily at home intravenous antibiotics via a central line in his chest for the next 40 days! Remember, I am not that kind of doctor, but this is why I often say I might as well be.
And it all started because his gland was blocked…
So what exactly is it?
Sjögren’s syndrome is an autoimmune disease that affects the body’s moisture-producing glands, such as the lacrimal and salivary glands. In fact, that is what most doctors think of when it comes to Sjögren’s, dry eyes and mouth. However, it can affect other organs systems, such as the lungs, kidneys, and nervous system. Primary symptom such as dry mouth and eyes are the most common, but it can also include fatigue and widespread pain. Other symptoms can include dry skin, vaginal dryness, a chronic cough, neuropathy, malaise, muscle and joint pain, and thyroid problems. There is also an increased risk of lymphoma developing.
While the exact cause is unclear, it is believed to involve a combination of environmental triggers (such as viruses) and genetics. When it is the result of another connective tissue disorder, it is known as secondary Sjögren’s syndrome. Sjögren’s syndrome may be associated with other autoimmune diseases, including rheumatoid arthritis, systemic lupus, or systemic sclerosis since the inflammations caused by these disorders progressively damages the glands. When Sjögren’s results indirectly of any other autoimmune diseases, it is known as primary Sjögren’s syndrome.
My husband was diagnosed with Sjögren’s back in 2017 via a blood test that showed he had the antibodies and was confirmed with a Schirmer’s test to determine if his eyes produced enough tears. To conduct a Schirmer’s test, an optometrist places a piece of filter paper inside the lower eyelid of both eyes and the person closes their eyes. After about 5 minutes, the filter paper is removed and assessed to see how far tears have travelled down on the paper. Needless to say, his confirmed that he had severely dry eyes and Sjögren’s was confirmed. Primary is what my husband has and it has caused many complications over the years including neuropathy, fatigue, chronic pain, brain fog, memory issues, liver problems, and so many more. I am convinced it caused his heart issues that lead to his pacemaker. Really, looking at the symptoms, it is just checking off the boxes.
- Neurological problems, concentration/memory-loss, dysautonomia, headaches
- Dry eyes, corneal ulcerations and infections
- Dry nose, recurrent sinusitis, nosebleeds
- Dry mouth, mouth sores, dental decay, difficulty with chewing, speech, taste and dentures
- A change in taste or smell
- Dry or peeling lips
- Dry or burning throat
- Swollen, painful parotid/salivary glands
- Difficulty swallowing, heartburn, reflux, esophagitis
- Recurrent bronchitis, interstitial lung disease, pneumonia
- Respiratory issues like shortness of breath, cough
- Stomach upset
- Abnormal liver function tests, chronic active autoimmune hepatitis (he had these way before anyone even thought about Sjögren’s!)
- Irritable bowel
- Arthritis, joint/muscle pain
- Peripheral neuropathy, Raynaud’s
- Fatigue
- Inability to focus or ‘brain fog’
- Skin sensitivity to UV light
Find out more
I highly recommend checking out the Sjögren’s Foundation website. There are also Facebook groups for support. It even qualifies as a “blue book” listing for Social Security Disability Insurance approval. Though it is a systemic disorder, so it is common for pieces to be diagnosed separately. For example, my husband has been dealing with liver issues since 2008, but no one ever made the connection of what was causing the “hepatitis induced symptoms of unknown origin”. Yes, that was his official diagnosis. He even had a doctor treating him at no charge at the time because they couldn’t figure out what was causing the issues…they just disappeared on their own. If only we knew then what we know now…
- National Institute of Neurological Disorders and Stroke
- Sjögren’s Foundation
- Johns Hopkins
- American College of Rheumatology
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