Sjögren's ("SHOW-grins") is a systemic, chronic autoimmune disease in which a person's white blood cells attack their moisture-producing glands. The most common symptoms are dry mouth and dry eyes, but Sjögren's also has many other serious symptoms that affect the entire body. Along with systems of extensive dryness, other serious complications include profound fatigue, chronic pain, major organ involvement, neuropathies and lymphomas. Also with this disease, no two people have the exact same set of symptoms. Sjögren's often occurs with other such disorders, such as rheumatoid arthritis and lupus. On average it takes three years to receive a Sjögren's diagnosis. As many as four million Americans have Sjögren's, with an estimated two and a half million currently undiagnosed. It can occur in all age groups, but frequency appears to increase with age. The average age to be diagnosed is forty. Nine out of ten Sjögren's patients are WOMEN.
+ a dry, gritty or burning sensation in the eyes
+ dry mouth
+ difficulty talking, chewing or swallowing
+ a sore or cracked tongue
+ dry or burning throat
+ dry or peeling lips
+ a change in taste or smell
+ increased dental decay
+ joint and muscle pain
+ vaginal and skin dryness
+ digestive problems
+ dry nose, nose bleeds
+ debilitating fatigue
+ swollen, painful parotid/salivary glands
+ stomach upset, irritable bowel
+ Primary Care Provider
+ ANA (Anti-Nuclear Antibody)
+ RF (Rheumatoid Factor)
+ SS-A (or Ro) and SS-B (or La)
+ ESR (Erythrocyte Sedimentation Rate)
+ IGs (Immunoglobulins)
+ All of the tests above are possibilities to help you get your diagnosis, but these are not definite. You could have Sjogren's and these tests could come back negative for you. That's why it is very important to be honest with your doctor about your symptoms and have a doctor you trust and that listens to you.
+ Also, my rheumatologist runs a full blood panel and work up, which checks my inflammation and everything, every time I go in for a check up, which for me is twice a year. But remember, every patient is different. You may only need to go once a year or four times a year, it just depends. When I first got diagnosed I was going to my doctor every four weeks.
+ immunosuppressive medications can be prescribed to treat internal organ manifestations
+ over the counter and/or prescribed eye drops
+ over the counter and/or prescribed products for dry mouth
+ moisturizing gels or vitamin E oil for dry or sore parts of the mouth or tongue
+ turmeric curcumin supplements have many benefits but I've been able to tell a big difference in how they've helped with my joint pain
METHODS OF HEALING
For swollen or infected salivary gland: try massaging the area, sucking on some sour hard candy, and drinking lots of water. I even like using those jade rollers that are so popular right now, they fit great on the jaw line and massage the area very well. And of course, if it gets too painful or swollen then go see a doctor and they can prescribe you something.
For dry eyes: keep eyes drops with you all the time, but if it's bad and you're at home then put a cold compress on your eyes. But if your eyelids are dry and red and inflamed then a warm compress is better.
For dry skin: put moisturizer on immediately after getting out of the shower, avoid fabric softeners. My hands are the driest part of me, so I always have really good lotion with me for them.
For dry mouth: of course drinking as much water as possible everyday for the rest of your life would help with not only dry mouth, but also your skin, glands, everything. But I will be honest with you, I'm not always great about drinking my water, so I won't judge you for not drinking yours. Chewing gum, moisturizing spray and gels.
For fatigue: pace yourself and know your limits, but still get exercise and have the life you want. Educate the people in your life so they know what you're going through.
Here are some great links and resources to help you as you navigate your Autoimmune Disease.
HAVE QUESTIONS OR NEED MORE SUPPORT?
ABOUT STORIE | I received my Sjögren's diagnosis the day after I turned twenty-three. After the shock, fear, and a lot of Google searching, I started a new journey in my life that I never imagined or wanted to be on. This wasn't in my "life plan." But hey, sometimes you got to make lemonade out of thin air. Hopefully, we can use what I've learned over the last five years, and continue to learn, to help you.=
AUTOIMMUNE DISEASE | Sjögren's Disease
Their stories are brave, honest and intimately revealing of their diagnosis, their successes, their hardships and their lives. Sharing their stories allows them to put words to their journey while providing inspiration to others with an autoimmune disease.