Sjögren’s Syndrome: 9 Ways to Self-Manage Symptoms
Sjögren’s syndrome is one of the most prevalent autoimmune diseases in the United States, affecting an estimated 7,000,000 people, with only 4,000,000 of those being diagnosed. While it primarily affects the salivary glands and tear ducts, it can also affect other cells and tissues in the body. (1)
The vast majority of cases are women, with only 10 percent of cases involving men. Sjogren’s syndrome can be very tough to diagnose, and many patients suffer for years with symptoms that include dry eyes, dry mouth, persistent fatigue and chronic pain due to inflammation. In fact, the Sjögren’s Syndrome Foundation states it takes nearly three years to receive a diagnosis. (2)
With this disease, the immune system attacks the moisture-producing glands, causing the hallmark symptoms of dry eyes and mouth. But, it is essential to understand that potentially serious complications, including interstitial lung disease, cystic lung disease, pulmonary hypertension, amyloidosis and lymphoma can occur. (3)
As with most autoimmune disorders, an exact cause has yet to be determined. However, it is generally believed that genetics play a key role in its development. Unfortunately, there is no cure, but there are effective natural treatments and conventional treatments to help manage the discomfort the symptoms cause.
While there is no cure, Sjogren’s syndrome can go into remission, or symptoms may come and go. Some may experience debilitating symptoms while others have mild symptoms — this is a very personal disease of varying degrees. While generally not considered a fatal disease, it is a serious one, and it is crucial that patients be monitored for potential complications.
In addition, this autoimmune disease often co-occurs with other autoimmune diseases including rheumatoid arthritis and Hashimoto’s thyroiditis, which are also other lifelong diseases for which there is no cure, and successful treatment focuses on staving off complications while providing the body the nutrients, rest and exercise it needs to thrive.
What Is Sjögren’s Syndrome?
Sjogren’s syndrome is a life-long systemic autoimmune disease that causes the white blood cells to mistakenly attack healthy cells and tissues. These white blood cells typically are focused on attacking germs to protect against infections. But with this condition, they focus first on destroying moisture-producing glands in the mouth and eyes. As the disease progresses, it can attack other parts of the body, including soft tissue, joints, nerves, kidneys, lungs, thyroid and the liver. (4)
About 50 percent of the time, Sjogren’s syndrome occurs alone. This is referred to primary Sjogren syndrome. The other 50 percent of the time, it happens alongside another autoimmune disease such as rheumatoid arthritis, Hashimoto’s disease, scleroderma or lupus and is referred to as secondary Sjogren’s syndrome. As it is considered a chronic inflammatory disorder and it shares many of the same symptoms with other autoimmune disorders, it can be difficult to diagnosis. (5)
This condition is not curable, but effective treatments to help minimize Sjogren’s syndrome symptoms are available. Sjogren’s can go into remission, and many people live productive and healthy lives. In fact, the vast majority of those diagnosed remain very healthy without serious complications. However, there are increased health risks associated with this condition.
Special precautions and regular communication with a rheumatologist is recommended so that any complication is caught quickly. Any changes in glands, pain and breathing should be reported immediately as it may be a result of problems developing in the lungs, liver or kidneys. If you are pregnant, it is vital that you communicate your diagnosis to your OB-GYN as serious complications can occur. (6, 7)
Sjögren’s Syndrome Symptoms
Symptoms and their severity vary widely from person to person. And the disease can evolve, go into remission, or worsen. Not every person with this chronic autoimmune disease will experience every symptom below. (8)
- Dry eyes
- Eyes that feel gritty, itch or burn
- Dry or chalky feeling in the mouth
- Burning mouth syndrome
- Tooth decay and cavities
- Gum disease
- Mouth sores
- Loss of taste
- Swollen salivary glands
- Dry cough and hoarseness
- Dry lips
- Difficulty in swallowing
- Heartburn or GERD
- Joint pain, swelling or stiffness
- Muscle pain and weakness
- Dry skin
- Skin rashes
- Vaginal dryness
- Prolonged or chronic fatigue
- Lung inflammation
- Symptoms associated with Raynaud’s phenomenon
- Symptoms associated with Hashimoto’s disease
Causes & Risk Factors
While researchers have not yet identified a cause, it is believed that certain genetic markers put people at a higher risk. But it seems that there must be some sort of a trigger for Sjögren’s to develop. The trigger may be due to extreme stress or from a viral or bacterial infection. In essence, this condition occurs when the body produces extra antibodies in the blood that attack healthy tissue and cells. This leads to inflammation and dysfunction of key organs and glands in the body. (9)
Recognized risk factors include: (10)
- Being female
- Being over 50
- Family members with an autoimmune disease
- Hashimoto’s disease
- Rheumatoid arthritis
- Raynaud’s disease
- Certain genetic markers
Dangers of Sjögren’s Syndrome
Complications and dangers of this condition can arise. (11)
- Dental cavities due to dry mouth
- Dry mouth — dental cavities
- Oral thrush
- Vaginal yeast infection
- Vision changes and blurred vision
- Corneal damage due to dry eyes
- Light sensitivity
- Inflammation in lung, kidney and liver
- Vasculitis, an inflammation of the blood vessels
- Nerve sensitivity — tingling, burning in hands and feet, and numbness
- Lymph node swelling
- Peripheral neuropathy
- Interstitial lung disease
- Cystic lung disease
- MALT lymphoma
- Loss of pregnancy
- Neonatal lupus syndrome
- Parotid tumors
What to Do if You Suspect Sjögren’s Syndrome
- Ask your physician to test antibody levels.
- Be your best advocate!
- Keep a journal of symptoms and discuss them with your doctor.
- Treat to relieve symptoms.
- Request specialist care from ophthalmologists, rheumatologists, otolaryngologists and dentists.
- Stay informed; researchers are working diligently to find effective treatments.
- Give up; it can take three or more years for a diagnosis.
- Lose hope; Sjögren’s can go into remission. Many people live a happy and healthy life.
Sjogren’s syndrome is very difficult to diagnose as many of the signs and symptoms are very similar to other diseases. And there are certain medications that mimic the signs. Diagnosis requires blood tests, eye tests, imaging tests and, sometimes, biopsies. Unfortunately, there is no single test that can give you an answer. Some of the tests to ask for include: (12)
- ANA Test. Seventy percent of those with this condition test positive for ANA.
- SSA and SSB Tests. The majority of patients with primary Sjogren’s have the antibodies identified in these tests.
- Rheumatoid Factor. Sixty to 70 percent of patients have a positive factor.
- Check Blood Proteins. Blood proteins are elevated for those with Sjogren’s syndrome.
- Schirmer’s Test. To test for dry eyes.
- Slit Lamp Exam. An ophthalmologist examines the eye for inflammation and dryness.
- Lip Biopsy. Removal and testing of salivary glands from the lower lip.
Like most autoimmune diseases, there is no cure. Conventional treatment protocols work to alleviate symptoms and prevent the development of potentially serious complications. Treatment varies depending on the symptoms experienced and their severity.
Researchers from Johns Hopkins Medicine, Division of Rheumatology, cite the challenges of treatment as this is a complex puzzle and each patient’s disease and treatment must be treated individually. Common conventional treatments include: (13, 14)
- Prescription eye drops for inflammation
- Saliva- and mucus-stimulating drugs
- NSAIDs for muscle and joint pain to relieve inflammation
- Corticosteroids for lung, kidney, blood vessels and the nervous system
- Antifungal medications for yeast infections and thrush
- DMARDs (disease modifying anti-rheumatic drugs) that suppress the immune system
- Surgical procedure to implant collagen or silicone plugs to preserve tears
9 Ways to Self-Manage Sjögren’s Syndrome Symptoms
1. Dry Eyes
To relieve dry, itchy eyes, use natural eye drops or a dab of organic coconut oil to help soothe and protect the eye. Rubbing dry eyes is not recommended as if there is a lack of tears to flush out particles, you can accidentally scratch your cornea.
In addition to topical treatments, researchers have found a link between low levels of omega-3 fatty acids and dry eye disease. Supplement with 1 tablespoon of a high-quality, cold-pressed and organic flaxseed oil each day. In addition, there is some evidence that supports the topical application of essential fatty acids for dry eyes. However, a medical-grade oil free from contaminants and particles is necessary. (15, 16)
2. Dry Lips
Dry mouth and a lack of saliva can cause dry and cracked lips. To relieve the discomfort, use a natural lip balm. My recipe for Homemade Lavender Mint Lip Balm contains no chemicals and can help provide soothing relief.
3. Oral Thrush
For best results, drink a couple of cups of tea with cinnamon oil, lemon and honey each day while symptoms persist. Pour very warm (not boiling) water into a mug over a slice of lemon and let sit for three to four minutes. Stir, remove the lemon slice, and add 1 teaspoon of raw honey and 6 to 8 drops of cinnamon oil.
4. Dry Skin, Eyes and Throat
Use a humidifier to add much-needed moisture to your home. This is particularly important in the bedroom. Find a humidifier that produces warm steam, and preferably one that is specially designed to diffuse essential oils into the air. Extensive research has shown that aromatherapy improves sleep quality, improves skin health, reduces fatigue, and can improve skin health. (18, 19, 20)
Choose your favorite essential oil to diffuse in the humidifier. For sleep, use lavender oil. For mental clarity and to boost mood, use rose oil. And for nausea use lemon oil. Of course, feel free to mix your own special combination that speaks to your needs.
5. Dry Mouth
It is important to sip water throughout the day and avoid acidic foods and beverages. That means giving up colas, sports drinks, coffee and alcohol as they can all worsen dry mouth symptoms and harm the enamel of the teeth. (21)
Enjoy moist foods and soups; avoid dry or chalky foods to preserve your saliva. Throughout the day, sip beef bone broth, which in addition to keeping your mouth moist, can help improve GERD symptoms, support healthy skin and joints, and relieve inflammation.
In addition, acupuncture has been shown to improve xerostomia, or dry mouth. In a study published in the Journal of Oral Rehabilitation researchers found that acupuncture induces an increase in local blood flow, increasing salivary flow. The study tested four different types of acupuncture stimulation and found that manual acupuncture and low-frequency electro-acupuncture provided the best, and longest-lasting results. (22)
6. Dental Health
Dry mouth, besides being uncomfortable, can damage tooth enamel and gums, leading to cavities and gum disease. It is essential to have regular checkups with a dentist who understands Sjogren’s syndrome, and to practice good oral hygiene.
In addition, practicing coconut oil pulling each day can help detoxify your mouth; prevent and treat tooth decay; kill bad breath; reduce inflammation; and soothe mouth and throat dryness. (23, 24, 25)
Increasing intake of omega-3-rich foods is a necessity to help fight the inflammation associated with Sjogren’s syndrome. Research shows that omega-3s reduce joint and muscle pain; improve mood; improve skin health; and support healthy cardiovascular function. (26)
For your Sjogren’s syndrome diet, be sure to include foods like wild-caught salmon, walnuts, natto, and ground flaxseeds. For a fresh, nutrient-dense, and satisfying meal, try my recipe for Salmon Kale Caesar Salad that is packed with healthy fats, protein, and essential vitamins and minerals.
8. Vitamin C
For immune system health, and to increase both tear and saliva production, take 1,000 milligrams of vitamin C daily, in addition to including vitamin C-rich foods in your diet. Vitamin C together with essential fatty acids can help improve dry eyes and dry mouth symptoms in patients with Sjogren’s. (27, 28)
9. Cancer & Neuropathy Protection
In a study published in the Journal of Autoimmunity, researchers state that low levels of vitamin D3 in patients with Sjogren’s are associated with an increased risk of neuropathy and lymphoma. As both of these conditions are a serious health concern and a recognized complication of Sjogren’s syndrome, it is essential to ensure you aren’t vitamin D deficient. Make sure you get plenty of direct sunlight each day, and consume vitamin D-rich foods like wild halibut, mackerel, eel and salmon. (29)
A note about a Sjögren’s diet. When fighting any autoimmune disease, a healthy diet is a must. Currently, researchers from Johns Hopkins Jerome L. Greene Sjögren’s Syndrome Center are actively recruiting participants diagnosed with rheumatoid arthritis or Sjögren’s who have dry mouth symptoms to study the impact of quality nutrition on dry mouth.
Sjögren’s Syndrome Key Points
- Sjögren’s syndrome is an autoimmune disease with no cure.
- The most common symptoms are dry mouth and eyes, joint pain, and inflammation and fatigue.
- Potentially serious complications include cavities because of dry mouth, thrush, vision problems and cornea damage, neuropathy, and lymphoma.
- While a relatively small percentage of patients develop lymphoma, it is imperative that any abnormal swelling in the glands around the face, neck, under the arms or in the groin area are evaluated immediately by your rheumatologist.
- Treatments focus on relieving symptoms and preventing complications.
9 Sjögren’s Syndrome Self-Care Tips
- Use natural eye drops to relieve dry eyes.
- Soothe dry lips with natural lip balms.
- Drink tea with lemon, honey and cinnamon oil.
- Use a humidifier to add moisture to your home.
- Sip beef bone broth, herbal teas and enjoy moist foods.
- Visit your dentist regularly and add coconut oil pulling to your daily dental health routine.
- Boost your intake of omega-3 fatty acids.
- Take 1,000 milligrams of a high-quality vitamin C.
- Get plenty of sunshine each day and consume vitamin D-rich foods.
Kathleen McCoyDr. AxeJanuary 3, 2018