Listen to Your Gut! David's Experience with Fatigue and GI Symptoms

For Men’s Health Awareness Month, we are highlighting three men with Sjögren’s and their stories, to show the heterogeneity of the disease (the varied ways the disease presents) and provide awareness that men can get Sjögren’s too!

David, age 59, who was diagnosed with Sjögren’s disease at age 48, experiences fatigue as his most debilitating symptom. Below is more about David’s experience living with Sjögren's as well as information about gastrointestinal (GI) symptoms in Sjögren’s. 

Can you describe your experience with your Sjögren’s diagnosis? 

I had been experiencing a range of Sjögren’s symptoms for at least three or four years before I got the diagnosis. I am sure the onset of my Sjögren’s disease was marked by a range of symptoms I tried to address individually, and only through that process did one physician suspect autoimmune disease at the core. Up until then I had never seen a rheumatologist or even heard of Sjögren’s.

My gastroenterologist suspected Sjögren’s as he was investigating GI symptoms and referred me to a rheumatologist who confirmed the diagnosis. While my symptoms have been pretty typical of the kinds of things Sjögren’s patients experience, I do think my path to diagnosis was less common and I’m very appreciative that my gastroenterologist was advanced and broad in his thinking.

What has your experience been as a member of an underrepresented group with Sjögren’s? 

Sjögren’s presents in different ways for different patients so it can be challenging to identify unless someone takes a big picture view- and since the disease and many other autoimmune diseases- are more common in women than men, physicians may just not be looking for Sjögren’s at first.

The disease and my diagnosis were surprising to me in general- I was not familiar with Sjögren’s nor is there a history of autoimmune disease in my family. Learning about the disease has been eye-opening for me and reminds me that we can never really know what someone is dealing with, especially if their symptoms are more or less invisible.

Are there any symptoms or conditions you believe are specific to male patients with Sjögren’s that you think other men with Sjögren’s should be monitoring?

I am not sure there are many symptoms or impacts specific to male patients. I participate in the men's support group and it’s very helpful to know the disease is real - if you are a male with Sjögren’s you are not alone and not imagining your symptoms. It’s also helpful to know the signs of what other impacts the disease might have to be able to flag them early for healthcare providers.

What would you like to see from the medical community in terms of acknowledging Sjögren's in men?

The Foundation has been working to reduce the time to diagnosis and educate health care providers that Sjögren’s is serious and systemic- not just nuisance dryness. I appreciate the Foundation’s efforts to give visibility and support to male patients so providers know Sjögren’s is real in men.

Can you share more about your most common symptoms and your most debilitating symptom? Have you found ways or tips for managing these symptoms and living with Sjögren’s?

Fatigue, brain fog, and dizziness: The best ways for me to manage fatigue and related symptoms have been mindfulness, meditation and pacing - which includes saying no sometimes and stopping before I get to my limit. 

Fatigue is my most difficult symptom. I’ve had to trade some interests for others. It’s hard to know how much energy I’ll have to complete tasks or enjoy experiences. So I manage my calendar, say no to things I think will be too much and try to be present. Meditation helps and I use pacing to stop well short of where I think my limit lies - that’s a big shift from the “just push through” and “try harder” messaging we are used to - but pushing past my limit is totally counterproductive for me. I like the Headspace app for meditation. 

Dryness: The winter season brings increased dryness so I use extra eye drops and a humidifier. I use Bausch & Lomb’s Soothe and iVizia preservative-free eye drops. 

Digestive issues: See below for more information on GI symptoms in Sjögren's.

Is there any advice you would like to share with your fellow men with Sjögren’s?

Yes- Sjögren’s in men is real - the disease is serious and systemic. But you are not alone and there are others to support you. There are lots of resources to tap at the Foundation to educate yourself so you can advocate for your own care. And it’s also more than okay to ask for help.

Gastrointestinal (GI) Symptoms in Sjögren’s

The gastrointestinal (GI) tract is rich in immune cells, antibodies, and nerves that play a role in the ability of the gut to digest food and absorb nutrients. However, approximately 90% of patients with Sjögren’s have GI involvement, which can be caused due to focal infiltration of T lymphocytes (where a type of white blood cell called T cells accumulates in a specific area of tissue), glandular dysfunction, or nerve dysfunction.¹

Gastrointestinal issues may also be caused by dysautonomia, an underlying malfunction of the autonomic nervous system caused by impaired signaling or damaged nerves. Dysautonomia can cause impairment of muscle movement in the esophagus, colon, intestines, and stomach leading to common symptoms like impaired swallowing, nausea, constipation, gastroparesis (delayed gastric emptying), and more.

Gastrointestinal disease may occur in 25% of patients with Sjögren's and include the following conditions and their occurrence (if known)^1,2,3: 

• dysphagia (difficulty swallowing)
• gastritis (inflammation of the gut);  ~80%
• gastroparesis (delayed gastric emptying); 30-70%
• hepatomegaly (enlargement of liver); 20%
• motility disorders (digestive problems due to muscle and nerve dysfunction)
• pancreatitis (inflammation of the pancreas); 20-40%
• pernicious anemia (deficiency of red blood cells)
• autoimmune hepatitis (liver inflammation)
• irritable bowel syndrome (IBS)
• abdominal pain; 54%
• diarrhea 
• constipation; 54%
• bloating
• flatulence
• vomiting
• nausea 
• food sensitivities
• gastrointestinal reflux disease

Gastroesophageal reflux disease (GERD)

GERD is a type of gastrointestinal (GI) disease that affects many patients with Sjögren’s. This can cause a wide variety of symptoms that can be mistaken for other conditions. Symptoms may include persistent heartburn and/or regurgitation of acid, stomach pain, hoarseness or voice change, throat pain, sore throat, difficulty swallowing, sensation of having a lump in the throat, frequent throat clearing, and chronic cough (especially at night time or upon awakening). GERD is more common in those patients with a decreased lower esophageal sphincter tone, which is a common occurrence in patients with Sjögren's and can lead to dysphagia and other motility issues.⁴

For more information and advice for gastrointestinal symptoms and conditions, please read our Patient Education Sheets on "GI Tips" and "Reflux and Your Throat."

Currently, there is no available research about sex differences in patients with Sjögren's and gastrointestinal conditions.

David's story highlights the unconventional path that many Sjögren's patients take to receive a diagnosis. Whether through a gastroenterologist like David, neurologist, oral health professional, or other healthcare professional, it is important to listen to your gut and advocate for your health! 

Thank you, David for sharing your experience living with Sjögren’s and helping to increase awareness about men with Sjögren’s!

References: 

1. Parreau S, Jacques J, Dumonteil S, et al. Abdominal symptoms during Sjogren's syndrome: a pilot study. Adv Rheumatol. 2021;61(1):5. Published 2021 Jan 19. doi:10.1186/s42358-021-00164-w
2. S. Retamozo, P. Brito-Zerón, C. Morcillo, B. Kostov, N. Acar-Denizli, M. Ramos-Casals. Chapter 15 - Digestive Involvement in Primary Sjögren's Syndrome, Editor(s): Manuel Ramos-Casals, Munther Khamashta, Pilar Britó-Zeron, Fabiola Atzeni, Joan Rodés Teixidor, Handbook of Systemic Autoimmune Diseases.  Vol 13. Elsevier. 2017: 271-292. https://doi.org/10.1016/B978-0-444-63707-9.00015-5.
3. Hammar O, Ohlsson B, Wollmer P, Mandl T. Impaired gastric emptying in primary Sjogren's syndrome. J Rheumatol. 2010;37(11):2313-2318. doi:10.3899/jrheum.100280
4. Lin C-Y, Wu K-L, Yao C-C, et al. Clinical characteristics and esophageal motility in Sjögren's syndrome: A single-center study in Taiwan. Adv Dig Med. 2021; 8: 218–223. https://doi.org/10.1002/aid2.13224