Living with Sjögren Syndrome
Sjögren Syndrome has an important impact on the patient's quality of life, because of the number of functions that can be affected, mainly involving dryness, fatigue and vital organs.
Sjögren Syndrome affects a sufferer’s daily life in physical, occupational, psychological, and financial terms, as well as their relationship with family and friends. However, unlike other systemic autoimmune diseases, it is not usually associated with a rapid deterioration of symptoms, or dramatic development over the years.
Simple lifestyle changes can help improve dryness symptoms and make daily activities more comfortable. Sjögren Syndrome sufferers should therefore consider taking the following measures:
- Visit a specialist in internal medicine (or rheumatology), dentist and ophthalmologist, at least six months after the onset of the disease (this can be done be annually and between visits to the primary care doctor). You should also visit a gynaecologist once a year.
- Avoid dry and excessively polluted environments, air conditioning, fans, fan heaters, windy and dusty places, tobacco smoke, and so on.
- Some drugs can aggravate the symptoms of dryness, so you should ask the medical team which are the most appropriate.
- It is advisable to use humidifiers with humidity control at night.
- During the day wear dark or tinted glasses, if possible, with side panels, to protect the eyes from the wind and sun, and minimise tear loss.
- Always carry a bottle of water and drink small sips frequently throughout the day, alternating this with rinsing.
- Chew gum or suck sugar-free candy to stimulate the salivary glands.
- Gently brush your teeth with a soft brush after each meal.
- Floss (carefully) at least once a day.
- Use natural moisturisers on the lips to keep them moist and prevent cracking.
- Avoid baths and showers that are too hot, frequent, or long-lasting.
- For personal hygiene, use detergent-free neutral soap, followed by natural oils and moisturisers, applied when the skin is still moist.
- Repeatedly relaxing or resting your eyes for a few minutes throughout the day is beneficial.
Alcohol. Avoid alcohol (including alcohol-based oral elixirs) because this can aggravate symptoms and mouth dryness.
Tobacco. You should not smoke, and you should avoid areas where people are smoking, as this can aggravate dryness symptoms.
Caffeinated drinks. These are not recommended.
Avoid very hot and spicy foods. These can aggravate the burning sensation in the mouth.
Avoid dry, sticky and sugary foods.
Nutrition. You should eat a healthy diet, like the Mediterranean diet.
Dryness can affect what the patient eats. Certain foods may irritate the mouth, while a lot of fluid may be required to swallow others. It is therefore recommendable to:
- Moisten foods with low-calorie dressings.
- Use a straw to help you swallow.
- Drink while eating.
- Try soft, creamy foods.
- Drink cold liquids.
- Avoid salty, sour, or spicy foods, and carbonated beverages because these prolong pain.
- Avoid hot foods. Room-temperature foods are easier to digest.
- Avoid hard, crunchy foods such as hard or crunchy meats, dry snacks, crispy bread, popcorn, or nuts, which can be irritating.
Exercise. The more exercise, the better, both mentally and physically. Many patients with damaged joints get relief from aquatic aerobic exercises, such as swimming or aquagym. Tai Chi and yoga, for example, are gentler activities that help reduce stress. In any case, it is advisable to consult your healthcare team about the most appropriate exercise for you.
Sleep. Patients with Sjögren Syndrome usually have little restorative sleep (in either quantity or quality), so whenever possible, you should increase the number of hours beyond the 7-8 hours recommended for the general population. The room should be comfortable, safe, dark and quiet. For good "sleep hygiene" you should get up at the same time every morning and go to bed with the lights turned off at the same time every night, and avoid all types of screens. Avoid alcohol and caffeine after 4 pm, and eat a small quantity of vegetables/fruits for supper.
Sex. Vaginal dryness often leads to painful intercourse (dyspareunia). A gynaecological examination can help rule out other causes of painful intercourse and other causes of vaginal dryness. Sterile lubricants are helpful. For patients who do not like gel-type lubricants, there are vaginal inserts. Finding the right lubricant is a matter of trial and error, as satisfaction with each one is a matter of personal preference. External use of preparations containing petroleum jelly or oils that "seal in" moisture, such as petroleum jelly or cocoa butter, can cause maceration of the vaginal lining and should be avoided. Vaginal dryness in peri-menopausal or post-menopausal women is often associated with vaginal atrophy due to decreased oestrogen levels, and therefore responds to vaginal oestrogen creams. Cortisone creams are not beneficial in this situation. If you contract a vaginal yeast infection, it should be treated immediately. Dryness on the outer surface of the vulva can be treated with lubricating creams, as with other skin surfaces.
Pregnancy. Women with Sjögren Syndrome should be aware that maternal anti-Ro antibodies may cause congenital heart block in pregnancy (from 18 weeks). This occurs in 2-3% of mothers with these antibodies. Congenital heart block is an abnormal foetal heart rate or rhythm.
Travel. Sjögren Syndrome symptoms can be aggravated by sunlight, especially in patients with positive anti-Ro antibodies. To reduce reactions to the sun, you should use the following protective measures:
- Wear sunglasses with UV protection and seek shade when in very sunny places and when the sun is strongest.
- Protect the skin and eyes with sunscreen, sunglasses, clothing with UV protection, hats, and use non-fluorescent lights.
- Consider purchasing UV protection films for cars and clear windows at home, or tinted glass to protect against UV radiation.
- Look for the words "broad-spectrum" on sunscreen products for protection against UVA and UVB radiation. Remember that water, moisture, and sweating diminish the effectiveness of sunscreen and mean the product must be reapplied.
Social and emotional support. Patient associations and support groups, led by volunteer patients, offer sufferers and their families the opportunity to share tips and recommendations for living more comfortably with the disease. You can learn a lot at a support group meeting, whether it is sharing opinions from patient to patient, or listening to informative presentations from health professionals or other experts.