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Living With Sjögren’s

Survival Tips

Survival Tips

Here are some favourite tips from our patients about how they cope and thrive with Sjögren’s.

General Tips

1.     Split your day into three parts and try to rest or be more restful during one of those parts. For example, if you are busy or have plans in the morning, then try to have a more restful afternoon or evening.

2.     Think of healthy diet, minimal stress, adequate sleep, and regular exercise as the legs of a stool. Any imbalance may result in the stool falling over and causing a Sjögren’s flare.

3.     Having a chronic disease like Sjögren’s really makes you learn about and focus on healthy living like never before.

4.     Sticking to a daily routine is more important than ever. Sjögren’s requires a great deal of self-care throughout the day.

5.     Never give up hope because you are not alone. Consider calling a local Sjögren’s support group leader or a contact person. Use a Sjögren’s chat room like Smart Patients to keep in touch with other patients. Connecting with another person with Sjögren’s can be very healing.

6.     Increasing humidity in your home and office up to 50% will improve many dryness symptoms in your eyes, mouth, sinuses, and skin.

7.     During appointments with your doctors, be your own advocate and let them know you want to be an active participant in your care. You know your body better than anyone.

8.     Remember to have patience and be kind to yourself.

9.     Work with a naturopath or dietician to discover your food sensitivities. This can influence your wellbeing and health and reduce symptoms and “flares”.

10.   Solid coconut oil soothes the mouth but can also be used on the vulva and in the vagina for dryness; it is cheap and works great!

11.   To help with GERD/acid reflux, sleep with your head slightly elevated by raising the head of your bed, or by placing a 4 to 6 inch foam pad (pillow wedge) under your sheets and pillows.

12.   Do regular gentle exercise to help with mobility, joints, and overall wellbeing. There are many free exercise videos available on YouTube such as Walk Fit, chair exercises, and Essentrics.

13.   If you use a CPAP machine, use the built-in humidifier to ease the dry nose breathing at night. The CPAP also counts the exact number of hours slept each night.

14.   Try meditation and mindfulness to reduce anxiety and stress. Happiness is “within” us. There are many phone apps that are available or YouTube videos, books and courses.

15.   Write down three things you are grateful for everyday no matter how small. This helps start the morning or end the day in a positive frame of mind.

Dry Eye Care

1.     It is best to be proactive, not reactive when it comes to using artificial tears. Using a good quality, preservative-free eye drop is the foundation of self-care in dry eye disease.

2.     Use a warm compress mask or hot washcloth for 3 to 5 minutes to release more oil onto the surface of your eyes followed by massaging your eyelids.

3.     There are literally hundreds of different treatments for dry eyes. Consult with your optometrist and/or ophthalmologist for assistance with determining the best options for you.

4.     When you are doing visual tasks such as reading or using your computer, take blink breaks. The cumulative effect of blinking less will cause dry eye symptoms to worsen.

5.     Refrigerate your cyclosporine/Restasis eye drops to help reduce the burning side effects.

Dry Mouth Care

1.     To rehydrate your mouth and soothe oral tissues, consider “oil pulling” using virgin coconut oil. Swish a half-teaspoon of oil up to 15 minutes in the morning and/or bedtime and then spit it out.

2.     To save time, do your coconut “oil pulling” while you are showering.

3.     Visit your dentist at least twice per year for cleaning and examination.

4.     Using gum and dry mouth products with xylitol may provide temporary relief will from dry mouth and help prevent dental decay.

5.     To help with swallowing, eat soft, moist foods with sauces and drink lots of water.

6.     To help stimulate saliva at night, wear a mouthguard or retainer such as Invisalign, which sits along the gum line.

7.     Swallow pills with yogurt to help them slide down or take them after you swallow liquid fish oil.