What is it like living with Sjogren's syndrome?

Finding what works for YOU is a difficult but important process. Although the hallmark symptoms are dry eyes, dry mouth, fatigue and joint pain, Sjögren's is a systemic disease and affects the entire body. Fatigue is often described as one of the most debilitating symptoms of Sjögren's.

Can you live a normal life with Sjogren's?

Although life expectancy is not typically affected, patients' quality of life is, and considerably. Secretory glands don't work, resulting in dryness in the eyes, mouth, throat, and other organs, along with complications such as pain, fatigue, and digestive problems.

Does sjogrens get progressively worse?

Sjögren's syndrome is a long-term condition that does not usually get better on its own, although the symptoms can often be treated. For some people it may just be a bit of a nuisance, while for others it can have a big impact on their daily life.

How does sjogrens make you feel?

You may experience dryness in your nose or throat or on your skin. Sjögren's syndrome can also affect the joints, lungs, kidneys, blood vessels, digestive organs and nerves, causing symptoms such as: Swollen glands, specifically behind the jaw and in front of the ears. Joint pain, swelling or stiffness.

How debilitating is Sjogren's syndrome?

The prevalence of fatigue in primary Sjögren's syndrome (pSS) is approximately 65-70%, and often reported as the most debilitating symptom (6). Next to pain and dryness, fatigue was one of the most common complaints that the patients would like to have improved (7).

Episode 2 - Living With Sjögren’s

What should I avoid with Sjogren's syndrome?

Individuals who experience severe xerostomia tend to avoid crunchy foods such as raw vegetables, dry or tough foods such as meats and breads, and sticky foods such as peanut butter. Xerostomia can also affect dental health.

Does having Sjogren's mean you are immunocompromised?

As a note – not all Sjögren's patients have compromised immune systems. This specific risk factor is for those who regularly take drugs to suppress the immune system.

What triggers a Sjogren's flare?

Autoimmune diseases such as Sjogren's syndrome are highly likely to be triggered by environmental factors such as pollution, infections, certain medications, diet, and allergy-causing agents. Make a note of potential environmental triggers, and try to steer clear of them as much as possible.

Can you cry with Sjogren's?

"Patients with Sjögren's syndrome experience chronic dryness of the eyes and mouth as well as other parts of the body, and thus have a hampered ability to cry. This may affect their ability to express their emotions and they often have to rely on words and facial expressions instead of tears as a result" said Ms.

What drugs make sjogrens worse?

Avoid medicines that are known to cause dry eyes. These include antihistamines, diuretics, and some antidepressants. Talk with your doctor if you take any of these medicines. Sometimes the benefits of a medicine outweigh the risks.

How do you calm a Sjogren's flare?

Corticosteroids. Corticosteroid medications, commonly known as steroids, decrease inflammation by suppressing the immune response. Doctors typically use steroids to treat flare-ups, when symptoms such as joint pain and rashes come on suddenly.

How does the sun affect Sjogren's syndrome?

Sunlight contains ultraviolet radiation that can trigger an autoimmune response. Sjogren's syndrome patients exposed to direct sunlight may develop rashes, sensitivity to light, and sudden flare-ups in symptoms. Therefore, shield yourself from direct sunlight by using sunscreen or sun-protective clothing.

Can Sjogren's go into remission?

The damage to salivary glands in Sjogren's syndrome cannot be reversed, but the symptoms can be controlled and, rarely, the disease goes into remission.

What is the overall prognosis for living with Sjogren's syndrome?

In most people with Sjögren syndrome, dry eyes and dry mouth are the primary features of the disorder, and general health and life expectancy are largely unaffected. However, in some cases the immune system also attacks and damages other organs and tissues.

How quickly does Sjogren's progress?

The condition may progress slowly, so the typical symptoms of dry eyes and mouth may take years to show. However, rapid onset can also occur. Symptoms can be mild, moderate or severe, and the progression is often unpredictable.

Can you work with Sjogren's syndrome?

Sjogren's Syndrome can be disabling, preventing your ability to work and earn a living. Sjogren's flare-ups lead to joint and muscle pain, fatigue, and dryness of the eyes and mouth. Some people suffer from swollen glands, skin rashes, and weakness and numbness in the extremities.

What vitamins help Sjogren's?

What were your first symptoms of Sjogren's?

What organs are affected by Sjogren's syndrome?

Sjögren's syndrome can also affect other body organ systems. These organs include the skin, joints, muscles, blood, lung, heart, kidney, and nerves.

How do you stop Sjogren's progression?

Eat well and often. Eating an anti-inflammatory diet is one of the ways to reduce Sjogren's syndrome flares and provide adequate nutrition, thereby reducing fatigue. Ensure that your diet consists of food with high fiber, healthy fats, and spices such as garlic, ginger, and turmeric.

Can Sjogren's turn into lupus?

Most often, the co-occurring autoimmune disease is rheumatoid arthritis. Other individuals with secondary Sjogren's may have lupus, scleroderma, primary biliary cirrhosis, or a different kind of autoimmune disease.

What does a Sjogren's tongue look like?

a smooth, red tongue. a change in how food tastes. dry, sore and cracked skin at the corners of your lips. problems such as tooth decay, gum disease, mouth ulcers, and oral thrush (a fungal infection that can cause a raw, red or white tongue)

Can people with Sjogren's syndrome get the Covid vaccine?

On December 27, 2020, the U.S. Centers for Disease Control and Prevention (CDC) issued guidance for those with underlying medical conditions, including those with autoimmune disease such as Sjögren's. The guidance states: “People with autoimmune conditions may receive an mRNA COVID-19 vaccine.

Does sjogrens make you feel cold?

Other conditions that have been linked to Sjögren's syndrome include: Raynaud's phenomenon – restricted blood flow to the hands and feet, which can cause them to feel cold, numb and painful.

What is the best medicine for Sjogren's syndrome?

Hydroxychloroquine (Plaquenil), a drug designed to treat malaria, is often helpful in treating Sjogren's syndrome. Drugs that suppress the immune system, such as methotrexate (Trexall), also might be prescribed.