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!
Robert, age 31, who was diagnosed with Sjögren’s disease at age 28, experiences chronic pain and fatigue as his most debilitating symptoms. Below is more about Robert’s experience living with Sjögren's as well as information about pain and fatigue in Sjögren’s.
Can you describe your experience with your Sjögren’s diagnosis?
My Sjögren’s diagnosis journey is a bit convoluted because it started not looking for Sjögren’s at all. When I was 15, I began developing unusual chronic pain, fatigue, and cardiac symptoms. Doctors thought it was pediatric postural orthostatic tachycardia syndrome (POTS) because I also had blood pressure dips and spikes. By the time I turned 18, my symptoms had faded to the point they were not impacting my life. I was mostly symptom free until I turned 26 when the same symptoms came back, but much stronger. I spent two years working with over a dozen doctors to find the root cause. The third neurologist I saw recommended we test for every known disease that overlaps with POTS, including Sjögren’s. I had not noticed, but over the two years becoming sick again my eyes had started burning on a frequent basis and I was having trouble swallowing dry foods. Multiple tests for salivary gland activity returned positive for Sjögren’s. From one perspective, I received a Sjögren’s diagnosis quickly after turning 28, but from another perspective, I might have been living with Sjögren’s for half my life. I am 31 now.
What has your experience been as an underrepresented group with Sjögren’s?
I think everyone with Sjögren’s is underappreciated in medicine right now, having POTS is also underappreciated, and being a younger man with that combination is very underrepresented. Looking back, there were plenty of signs I had low disease activity for years, but I only started receiving intensive help when I had high disease activity, and only when I started advocating for myself. I’m thankful I found medical providers who are patient-centric, listen to my concerns, and are willing to explore solutions with me.
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?
My biggest struggle with Sjögren’s as a man has been managing fatigue. I feel like the traditional male social role asks us to ignore exhaustion to stay productive. Before I became severely ill, I frequently brought up fatigue as a complaint in doctor visits, but both my doctors and I thought it was because I worked in a high stress industry. Everyone else was tired as well.
What would you like to see from the medical community in terms of acknowledging Sjögren's in men?
I wish there were better ways of talking about pain and fatigue, especially in medical contexts and as part of an autoimmune disease. I think it is hard to communicate how impactful these symptoms are on a 1-10 pain scale during a medical intake. I also wish the medical community were more open to exploring autoimmune disease in male patients and younger patients. They make up a minority of cases.
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 and Pain: My most common and most debilitating symptoms are chronic pain and fatigue, which are very hard to manage. Chronic pain is often a moving target. Some months I can stave it off with good sleep, physical therapy, hot showers, and a healthy diet. In other months I must accept intense pain and distract myself with good music, movies, books, and video games. My wife is my best teammate during bad days, and I cannot thank her enough for the help she gives me when I am physically limited.
Over the long term, I have found careful exercise and physical therapy to be the best help for pain and fatigue. Four years ago, I was bed bound through most of the week. I worked with a physical therapist who specialized in autoimmune disease recovery, and he helped me gain enough strength to lift heavy weights on my good days.
Dry eyes and dry mouth: Ironically, I find dry eyes and dry mouth easier to manage. I chew xylitol gum throughout the day, I rinse with anti-cavity Cari-free mouthwash at night, and I use various over the counter eye drops. I usually sleep with a large humidifier at night, which makes traveling without it challenging but I am usually comfortable at home.
Is there any advice you would like to share with your fellow men with Sjögren’s?
Don’t ignore pain and fatigue! Build a support team that helps you get through your worst days. It is ok to seek help when you need it. Getting help is not a sign of personal failure. Be friendly and polite with your doctors but stand firm if you need your doctor to take an issue seriously.
Fatigue in Sjögren’s
Fatigue is a hallmark in many rheumatologic diseases,1 and, just like Robert and David, many other patients with Sjögren’s experience fatigue. In fact, 88% of patients with Sjögren’s reported having symptoms of fatigue within the past 12 months and a staggering over 90% of those patients experience daily to weekly fatigue according to our Living with Sjögren’s patient survey. Approximately 90% of participants said that fatigue had a moderate to major impact on their life with 25% stating that fatigue- of all symptoms experienced- has had the greatest negative impact on their life.
According to Dr. Teri Rumpf, PhD— a psychologist specializing in treating patients with chronic illness, a patient with Sjögren’s, and author of The Sjögren’s Syndrome Survival Guide —, there are 13 main subtypes of fatigue (adopted and modified from 13 Types of Fatigue in Sjögren’s):
- Basic fatigue: This is the inherent fatigue that may be attributed to the inflammatory, autoimmune nature of Sjögren’s. It differs from normal fatigue in that you don't have to do anything to deserve it. It can vary from day to day but it is always there. This can also be called baseline fatigue, which fluctuates and gets better or worse. All the following subtypes are superimposed on this basic fatigue.
- Rebound fatigue: If you push yourself too far and ignore body cues sent to stop and rest, your body will fight back. When you do more than you should, the result is immobilizing fatigue. It comes after the fact, i.e., do too much one day and feel it the next. Extended periods of overexertion can cause a flare.
- Sudden fatigue: This is the type of fatigue that comes on suddenly and you have to stop whatever you’re doing and just sit down. It can happen anywhere, at any time. It is the kind of fatigue that can induce immediate brain fog. It is visible to those who are observant.
- Weather related fatigue: Not everyone has this ability, but some people can tell when the barometric pressure is dropping even before a storm. This can feel like a sweeping wave, a malaise, that sometimes lifts just after the rain or snow has started. As the storm starts to pass, you may feel energy coming back. This kind of fatigue is accompanied by an increase in muscle aches and joint pain.
- Molten lead phenomenon: This fatigue is often present first thing in the morning. It can feel as if someone has poured molten lead in on your head and on all your limbs while you slept. You may experience muscle and joint pain and doing anything is like walking with heavy weights. It is often associated with increased symptoms of fibromyalgia and is sometimes helped by heat and massage.
- Tired-wired: Tired-wired is a feeling that comes from certain medications, such as prednisone, too much caffeine, or too much excitement or perhaps it is just a function of Sjögren’s. Your body is tired, but my mind wants to keep going and won’t let your body rest.
- Flare-related fatigue: Flare-related fatigue is an unpredictable state of increased fatigue that can last for days or weeks. It may be caused by an increase in disease activity or an undetected infection. If the latter, it either resolves on its own, or eventually presents other signs and symptoms that can be diagnosed. Additional rest is essential to deal with this kind of fatigue, but rest alone will not necessarily improve it or make it go away. Once a flare begins, it is impossible to predict where it will go or how long it will last.
- Fatigue related to other physical causes: Fatigue related to other physical causes, such as thyroid problems or anemia or other diseases superimposed on Sjögren’s. This kind of fatigue makes you feel that you are climbing a steep hill when you are really walking on level ground. It may resolve once the underlying organic condition is diagnosed and treated. Thyroid problems and anemia are both common among patients with Sjögren’s, but many other kinds of fatigue may be superimposed. Sjögren’s and fibromyalgia often co-exist, such that it is difficult to separate one from the other.
- Fatigue impairs concentration: Fatigue impairs concentration, precludes thought, and can make you too tired to talk, think or read. Fatigue can rob you of memory and quick thinking. For some, brain fog goes hand-in-hand with other kinds of harmful fatigue.
- Stress, distress, anxiety or depression: Stress, distress, anxiety or depression all can create a leaden kind of emotional fatigue that can be as exhausting as one due to physical causes. Although some people do not associate their increased fatigue with emotional states, many are aware of the effects of increased anxiety and depression, even if they cannot control what they feel. Intense emotion is very draining. Stress, anxiety and depression are all known to disrupt sleep.
- Fatigue that comes from not sleeping well: Some people with Sjögren’s have trouble both getting to sleep and staying asleep. Some wake up in the morning feeling as if they had never slept at all. Many aspects of Sjögren’s affect sleep: being too dry, in too much pain or malaise; multiple trips to the bathroom, the need for water or to put in eye ointment all deter a good sleep. Lack of restorative sleep increases fatigue. Fibromyalgia worsens when you don’t get a good night’s sleep. Chronic pain increases fatigue.
- Fatigue that comes with normal aging: Even though fatigue is caused by older age, patients with Sjögren’s may not be able to do the same level of activity as others their age.
- Fatigue that comes from a chronic illness that just won’t quit: Dr. Rumpf eloquently described this with the old expression “sick and tired of being sick and tired” and explained that this phrase truly captures what many with chronic illnesses feel. There’s a type of fatigue that comes with the uncertainty of a chronic disease. It’s a debilitating fatigue born of never knowing what will come next.
Pain in Sjögren’s and Men
Fatigue and pain are often associated, where pain can be a predictor for fatigue, and both can significantly reduce the quality of life in patients with Sjögren’s.2 In our Living with Sjögren’s patient survey, approximately 41% of men had moderate to severe fatigue and 20% had moderate to severe pain with most experiencing fatigue and pain daily/weekly. There are different types of pain that can be present in patients with Sjögren’s, including articular (joint) pain, neuropathic pain, and widespread pain including fibromyalgia (a condition that causes pain and tenderness in the muscles), which can occur in different locations at the same time or at different times.2
Some common manifestations of pain in Sjögren’s include:
- Joint pain
- Muscle pain
- Fibromyalgia
- Neuropathy, including facial nerve pain
- Lymph node pain and swelling
According to our Living with Sjögren’s patient survey, men with Sjögren’s reported that joint pain (73%), muscle pain (66%), neuropathy (78%), facial nerve pain (47%), and lymph node pain and swelling (33%) had a moderate to major impact on their life in the past year. Men with Sjögren’s also reported being diagnosed with fibromyalgia (18%) and rheumatoid arthritis (24%), which are known to also cause muscle and/or joint pain. While women with Sjögren’s reported experiencing fibromyalgia more than men, this data shows that men also experience fibromyalgia and other forms of pain.
To alleviate pain, ask your doctor about medications, exercises, and/or useful tools including heating pads, cold packs, and massage therapy that may help reduce pain and increase your comfort. Remember that just like everyone’s experience with Sjögren’s is different, everyone’s experience with pain is also different. Advocate for a treatment plan that works for you!
For advice and tips on managing muscle and joint pain, please read our Patient Education Sheet: Muscle and Joint Pain in Sjögren’s.
Robert’s story shows that not only does Sjögren’s occur in men, but also can occur in younger men. Nervous system involvement, most often experienced as pain, can be the initial symptoms experienced by patients with Sjögren’s. It’s also more than okay for men to acknowledge that they experience pain and fatigue too!
References:
- Miyamoto ST, Lendrem DW, Ng WF, Hackett KL, Valim V. Managing fatigue in patients with primary Sjögren's syndrome: challenges and solutions. Open Access Rheumatol. 2019 Apr 24;11:77-88. doi: 10.2147/OARRR.S167990. PMID: 31118841; PMCID: PMC6503647.
- Vitali C, Del Papa N. Pain in primary Sjögren's syndrome. Best Pract Res Clin Rheumatol. 2015;29(1):63-70. doi:10.1016/j.berh.2015.05.002
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!
Robert, age 31, who was diagnosed with Sjögren’s disease at age 28, experiences chronic pain and fatigue as his most debilitating symptoms. Below is more about Robert’s experience living with Sjögren's as well as information about pain and fatigue in Sjögren’s.
Can you describe your experience with your Sjögren’s diagnosis?
My Sjögren’s diagnosis journey is a bit convoluted because it started not looking for Sjögren’s at all. When I was 15, I began developing unusual chronic pain, fatigue, and cardiac symptoms. Doctors thought it was pediatric postural orthostatic tachycardia syndrome (POTS) because I also had blood pressure dips and spikes. By the time I turned 18, my symptoms had faded to the point they were not impacting my life. I was mostly symptom free until I turned 26 when the same symptoms came back, but much stronger. I spent two years working with over a dozen doctors to find the root cause. The third neurologist I saw recommended we test for every known disease that overlaps with POTS, including Sjögren’s. I had not noticed, but over the two years becoming sick again my eyes had started burning on a frequent basis and I was having trouble swallowing dry foods. Multiple tests for salivary gland activity returned positive for Sjögren’s. From one perspective, I received a Sjögren’s diagnosis quickly after turning 28, but from another perspective, I might have been living with Sjögren’s for half my life. I am 31 now.
What has your experience been as an underrepresented group with Sjögren’s?
I think everyone with Sjögren’s is underappreciated in medicine right now, having POTS is also underappreciated, and being a younger man with that combination is very underrepresented. Looking back, there were plenty of signs I had low disease activity for years, but I only started receiving intensive help when I had high disease activity, and only when I started advocating for myself. I’m thankful I found medical providers who are patient-centric, listen to my concerns, and are willing to explore solutions with me.
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?
My biggest struggle with Sjögren’s as a man has been managing fatigue. I feel like the traditional male social role asks us to ignore exhaustion to stay productive. Before I became severely ill, I frequently brought up fatigue as a complaint in doctor visits, but both my doctors and I thought it was because I worked in a high stress industry. Everyone else was tired as well.
What would you like to see from the medical community in terms of acknowledging Sjögren's in men?
I wish there were better ways of talking about pain and fatigue, especially in medical contexts and as part of an autoimmune disease. I think it is hard to communicate how impactful these symptoms are on a 1-10 pain scale during a medical intake. I also wish the medical community were more open to exploring autoimmune disease in male patients and younger patients. They make up a minority of cases.
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 and Pain: My most common and most debilitating symptoms are chronic pain and fatigue, which are very hard to manage. Chronic pain is often a moving target. Some months I can stave it off with good sleep, physical therapy, hot showers, and a healthy diet. In other months I must accept intense pain and distract myself with good music, movies, books, and video games. My wife is my best teammate during bad days, and I cannot thank her enough for the help she gives me when I am physically limited.
Over the long term, I have found careful exercise and physical therapy to be the best help for pain and fatigue. Four years ago, I was bed bound through most of the week. I worked with a physical therapist who specialized in autoimmune disease recovery, and he helped me gain enough strength to lift heavy weights on my good days.
Dry eyes and dry mouth: Ironically, I find dry eyes and dry mouth easier to manage. I chew xylitol gum throughout the day, I rinse with anti-cavity Cari-free mouthwash at night, and I use various over the counter eye drops. I usually sleep with a large humidifier at night, which makes traveling without it challenging but I am usually comfortable at home.
Is there any advice you would like to share with your fellow men with Sjögren’s?
Don’t ignore pain and fatigue! Build a support team that helps you get through your worst days. It is ok to seek help when you need it. Getting help is not a sign of personal failure. Be friendly and polite with your doctors but stand firm if you need your doctor to take an issue seriously.
Fatigue in Sjögren’s
Fatigue is a hallmark in many rheumatologic diseases,1 and, just like Robert and David, many other patients with Sjögren’s experience fatigue. In fact, 88% of patients with Sjögren’s reported having symptoms of fatigue within the past 12 months and a staggering over 90% of those patients experience daily to weekly fatigue according to our Living with Sjögren’s patient survey. Approximately 90% of participants said that fatigue had a moderate to major impact on their life with 25% stating that fatigue- of all symptoms experienced- has had the greatest negative impact on their life.
According to Dr. Teri Rumpf, PhD— a psychologist specializing in treating patients with chronic illness, a patient with Sjögren’s, and author of The Sjögren’s Syndrome Survival Guide —, there are 13 main subtypes of fatigue (adopted and modified from 13 Types of Fatigue in Sjögren’s):
Pain in Sjögren’s and Men
Fatigue and pain are often associated, where pain can be a predictor for fatigue, and both can significantly reduce the quality of life in patients with Sjögren’s.2 In our Living with Sjögren’s patient survey, approximately 41% of men had moderate to severe fatigue and 20% had moderate to severe pain with most experiencing fatigue and pain daily/weekly. There are different types of pain that can be present in patients with Sjögren’s, including articular (joint) pain, neuropathic pain, and widespread pain including fibromyalgia (a condition that causes pain and tenderness in the muscles), which can occur in different locations at the same time or at different times.2
Some common manifestations of pain in Sjögren’s include:
According to our Living with Sjögren’s patient survey, men with Sjögren’s reported that joint pain (73%), muscle pain (66%), neuropathy (78%), facial nerve pain (47%), and lymph node pain and swelling (33%) had a moderate to major impact on their life in the past year. Men with Sjögren’s also reported being diagnosed with fibromyalgia (18%) and rheumatoid arthritis (24%), which are known to also cause muscle and/or joint pain. While women with Sjögren’s reported experiencing fibromyalgia more than men, this data shows that men also experience fibromyalgia and other forms of pain.
To alleviate pain, ask your doctor about medications, exercises, and/or useful tools including heating pads, cold packs, and massage therapy that may help reduce pain and increase your comfort. Remember that just like everyone’s experience with Sjögren’s is different, everyone’s experience with pain is also different. Advocate for a treatment plan that works for you!
For advice and tips on managing muscle and joint pain, please read our Patient Education Sheet: Muscle and Joint Pain in Sjögren’s.
Robert’s story shows that not only does Sjögren’s occur in men, but also can occur in younger men. Nervous system involvement, most often experienced as pain, can be the initial symptoms experienced by patients with Sjögren’s. It’s also more than okay for men to acknowledge that they experience pain and fatigue too!
References:
Men with Sjögren's
Please visit our Men with Sjögren's page to learn more about Sjögren's disease, read male patient stories, and learn more about how Sjögren's can affect you.
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