Look below for short but essential survival tips for Sjögren’s patients
General Survival Tips
It is important to find a doctor who is both a good partner in treating your disease, as well as a good listener! Never feel guilty about seeking a second opinion, especially given the overlap and uncertainty with Sjögren’s.
When seeking information on Sjögren’s, consider the source. Make sure the source is authoritative, knowledgeable and up-to-date.
Identify major stressors in your life and work with a mental health professional or your support system to minimize their impact.
Always take non-steroidal anti-inflammatory drugs (NSAIDs) with food or milk to avoid stomach upset.
If you have Sjögren’s and are employed, ask for needed accommodations such as flexible hours, additional breaks, or changes in your job duties.
Just because an over-the-counter (OTC) product is natural does not make it safe or appropriate. Always discuss natural remedies with your doctor.
Join a Sjögren’s Foundation Support Group to meet other people with Sjogren’s. You will feel better knowing that you are not alone, you will learn more about Sjögren’s from fellow patients and expert speakers, plus you will find new ways to cope with your disease.
Listen to your body. Do not take on more than you can handle, and pay attention to new symptoms, or symptoms that get worse, and tell your physician.
Find a doctor who will coordinate all of your care in Sjögren’s and head your “medical care team.” Usually this is a rheumatologist, but a family doctor or general practitioner may also fill this role.
Become an active participant in treatment decisions and an informed consumer. You will feel more in control of your disease, decrease anxiety, and ensure you are getting the best possible medical care for you.
You can maintain a good quality of life with Sjögren’s. Stay on top of the latest information, educate yourself through the Sjögren’s Foundation, find support and watch your limits.
Make sure your physician knows about all the prescription and OTC medications you are taking. Many drugs have side effects that can make your Sjögren’s symptoms worse.
Remember that just because a symptom can’t be seen easily, your symptom is still important. If you feel your Sjögren’s symptoms are dismissed by a physician, help educate your physician and/or find another physician.
Seek positive relationships in your life. These will help you cope and will reduce general anxiety when you have a frequently misunderstood disease.
Living a healthy lifestyle consisting of an anti-inflammatory diet, adequate sleep, exercise, and minimal stress are an important part of living well with a chronic disease like Sjögren’s.
When you meet with your doctor, bring two copies of your list of questions to the appointment, one for you and one for your doctor
Both heat and cool packs can help relieve muscle and joint pain associated with Sjögren’s. Use heat for joint stiffness and to relax muscles. And use cold packs to help reduce inflammation/swelling on sore joints and muscles.
Be your own advocate. No one knows your body better than you. No one knows your pain better than you. No one knows what makes you happy better than you. You are the expert on you.
Sjögren’s is not a “cookie cutter” disease & affects patients differently. This is why one coping technique will not work for every patient. 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. To combat this, turn your friends and family into a support system by educating them about what you are going through and how Sjögren’s fatigue can come and go. Then, ask them to be prepared to do one or two chores for you on your fatigue days. Be reasonable with your expectations and give them specific instructions in advance.
Stay hydrated and informed! If you have Sjögren’s & reoccurring kidney stones, talk to your doctor about an electrolyte imbalance being a possible cause.
Be your own best advocate! Become an active participant in treatment decisions and an informed consumer. Learn more about different treatment options and talk to your doctor about what could work for you.
“No" is a complete sentence and it’s ok! If you are a person who has taken care of many people and many things, it’s time to look at that. Sometimes it’s a good thing and sometimes it crosses over into something else. Try letting go of the ‘something else.’ It’s also time to let go of feeling bad about it!
Remember to pay as much attention to your mental health as you do your physical health. The mind-body connection is real and plays a major role in combating any illness.
A drop of earwax remover or mineral oil can help dry itching ears.
Try using a humidifier to help combat nasal & sinus dryness associated with Sjögren’s. For Sjögren’s patients, an optimal range of humidity is between 55% and 60% regardless of the ambient temperature. You can monitor the humidity in your home with a simple humidistat.
Listen to your body, before it gets bad. Many times you can foresee fatigue or a flare coming and one of the biggest recommendations is to rest if you feel you need rest. Don’t feel guilty about declining a commitment - your body comes first.
Exercise is key to battling fatigue. It may seem counterproductive, but exercise will overcome fatigue, maintain flexibility and overcome joint and muscle pain. Consider adding yoga to your routine.
Reduce caffeine and alcohol to help with “brain fog” and sleep problems in Sjögren’s.
Letting yourself laugh and talk about your feelings will help reduce stress and anxiety, which contribute to fatigue and “brain fog” in Sjögren’s.
Sjögren’s patients who have trouble sleeping should make sure the bedroom is comfortable, secure, dark, cool, quiet and well-humidified. Avoid T.V. and screen time in bed or just before bedtime.
To maintain good “sleep hygiene,” get out of bed at the same time every morning and into bed with lights out at the same time every night.
Relaxation and Meditation techniques may be a good practice that can help alleviate stress and anxieties that may lead to sleep disturbances.
Use nasal sprays and gels to moisturize and clean your nose and prevent getting stuffed up.
Dry Eye Survival Tips
Carry artificial tears when traveling on a plane and avoid fans blowing directly on you to avoid dry eyes.
The mainstay of treatment for blepharitis, a chronic condition that accompanies dry eye and Sjögren’s, is warm compresses, lid massage and lid hygiene. If the blepharitis is acute, you might need a prescription antibiotic ointment.
If your eyes are bothered by light, wear sunglasses or try lenses with a FL-41 filter.
Avoid applying anything to the eyelids that can irritate your dry eye; products placed on the eyelid will get into the tear film.
Use non-preserved artificial tears frequently and regularly, even when your eyes feel good. The goal is to keep your eyes comfortable, not to wait until they are uncomfortable.
Keep the upper and lower eyelids free of facial creams at bedtime; they can enter the eye and cause irritation.
Dry eye patients often develop or aggravate their environmental allergies. An over-the-counter (OTC) allergy drop (even if preserved) used twice daily may help.
Try ointments or gels at bedtime by first applying them only to the eyelids and lashes. If that is not helpful, place ~1/4 inch of ointment between the lower lid and eyeball.
Eye ointments and gels can blur your vision and are usually reserved for overnight use.
Apply a warm, wet washcloth or a microwaveable mask to the closed eyes at bedtime and upon awakening for 5 minutes or more to stimulate the oil glands in the eyelids.
If your vision is blurred with artificial tear use, try a less thick (viscous) drop or ointment.
Try moisture chamber glasses, wrap-around sunglasses, or other glasses, goggles or shields to prevent moisture evaporation and offer protection from air currents that irritate your dry eye.
When you are reading or looking at a computer screen or TV, take blink breaks to give your eyes a rest and to stabilize the surface of your eyes.
Consider taking Omega-3 supplements to help the glands in your eyelids produce better quality oil. You may wish to check with your eye doctor first.
Using a humidifier in your home and workplace especially during the winter months, is very helpful to lessen dry eye symptoms. Keep the humidity between 40 and 50%.
Avoid environmental stresses that worsen dry eye, such as low humidity, drafts from air conditioners or fans, smoke, dust, or excessive makeup.
Talk with your healthcare provider about avoiding, when possible, taking drugs that cause dryness as a side effect, such as certain drugs for blood pressure regulation, antidepressants, and antihistamines (e.g. Benadryl®).
If you wear or are interested in contact lenses, keep in mind that daily disposable contact lenses tend to be the most comfortable and healthiest option for those with dry eye as opposed to reusable contacts. In some cases, special customized lenses are used to treat advanced dry eyes, such as the scleral lens.
Dry eye is a chronic, progressive disease. To help manage and treat your dry eye, it’s important to communicate with your eye care professional that you have Sjögren’s. You should be checked annually or more often depending on the severity of your dry eyes.
Dry Mouth Survival Tips
A diminished sense of taste may occur with Sjögren’s because of the lack of saliva. While there is no specific treatment for taste disorders found in Sjögren’s, using liquids to wet the food in your mouth may help increase the taste.
If you have trouble swallowing, eat soft, moist foods with lots of sauces. Always have water available while you eat.
Avoid salty, acidic, spicy, and/or dry foods and carbonated drinks that may be painful in your dry mouth or interfere with digestion in Sjögren’s.
Help prevent dental decay by using oral products containing the sweetener xylitol.
For dry mouth, increase your intake of liquids during the day - small sips of water work best.
Sjögren’s patients should avoid mouthwashes and rinses that contain alcohol or witch hazel. These ingredients can aggravate oral dryness and burning.
Chew sugar-free gum or suck on hard diabetic or sugar-free candies to help increase saliva.
Apply vitamin E oil, coconut oil, or moisturizing gels to dry or sore parts of the mouth or tongue for long-lasting relief. Use the liquid oil or punch holes in vitamin capsules.
Consider “oil pulling” using coconut or olive oil to soothe and rehydrate oral tissues. This involves swishing the oil for several minutes and then spitting it out.
People with Sjogrens are at an increased risk for gum disease and infections. Brush your teeth at least two times a day. When you are done brushing, floss and rinse with water .
Visit the dentist at least twice a year to have teeth cleaned and examined.
Use lip balm for lips that are dry and cracked.
Ask your dentist if you need a fluoride gel or have your teeth fluoride varnish to protect from tooth decay.
Don’t Smoke and stay out of smoky rooms. Smoking speeds up the evaporation of saliva.
Dry Skin Survival Tips
Use warm, not hot, water for bathing and use soap sparingly. Apply lotion as soon as possible to seal in moisture.
Sjögren’s patients with dry skin should pat dry after bathing and moisturize immediately while the skin is still damp. You can use petroleum jelly, bath oil or even some cooking oils such as safflower oil, olive oil, Canola® oil and Crisco®.
Drag moisture into your skin by using products that contain chemicals such as urea, glycerin, lactic or similar “metabolic” or alpha-hydroxy acids, such as AmLactin® cream or Carmol® and Cerave (a dermatologist recommended body cream specifically for severely dry skin).
Sjögren’s patients with dry and/or sensitive skin should avoid fabric softeners in the washer and dryer.
After swimming, make sure that you shower and then immediately use a moisturizer to reduce dry skin symptoms.
Use gloves when you are using strong soaps or chemicals to clean. One way to get in the habit is to keep a pair of gloves in several areas, i.e. kitchen, bathroom, garage.
Use a humidifier, especially if you have forced-heat, which is especially drying. For Sjögren’s patients, an optimal range of humidity is between 55% and 60% regardless of ambient temperature.
Terry robes will dry you gently, or after the shower, let yourself dry naturally since the moisture from the water will be absorbed by your skin.
Have a small hand cream on you at all times, especially in the winter to apply. Keep gloves on you at all times.
Use sunscreen when you are going to be outdoors. Consider investing in sun protective clothing or try using SunGuard®, which can be washed into regular clothing in the washing machine.
Sun and Sjögren's Survival Tips
To reduce reactions to the sun, wear good Ultraviolet (UV)-protective eye lenses and sunglasses, and seek the shade when outside.
Protect your skin and eyes through use of sunscreen, sunglasses, Ultraviolet (UV) light-protective clothing, hats, and non-fluorescent lighting.
Did you know that Sjögren’s patients can react to the sun and other sources of Ultraviolet (UV) light? Consider purchasing UV-protective car and home window films that are clear or tinted to protect yourself from UV radiation.
Sjögren’s patients who react to the sun should be especially careful to use sunscreen that protects against both UVA and UVB rays. Doctors now recognize the dangers of UVA light, in addition to those of UVB.
Many Sjögren’s patients are actually vitamin D deficient, and any amount of sun won’t equal what a supplement may provide, so consider adding Vitamin D to your daily supplement regimen.