Penn Rheumatology

Health Information for Sjögren's Syndrome

Those living with Sjogren's syndrome may experience symptoms such as fatigue, constipation and dry mouth. The following health information and useful tips will help you manage and cope with day-to-day symptoms to lead a more comfortable, productive life.

Fatigue Fighters

Fatigue is one of the most prevalent and disabling symptoms of Sjögren's syndrome. Here are some tips that can help you cope with the problem.

  1. Work with your doctor to find a specific cause and treatment for your fatigue. The possibilities may include systemic inflammation, poor sleep, fibromyalgia, depression, anxiety, hypothyroidism, muscle inflammation or side effects of medications.
  2. Know your limits and pace yourself. Plan to do no more than one activity on your bad days. Try to do more on your good days but don't overdo it!
  3. Listen to your body and plan to take a 20 minute time out every few hours to help you get through your day.
  4. Educate your friends and family about what you are going through and how the fatigue in Sjögren's syndrome can come and go.
  5. Develop a support system to help you with tasks. Ask friends and family members to be prepared to do one or two chores for you on your fatigue days. Give them specific instructions in advance and be reasonable with your expectations.
  6. Get at least 8 hours of sleep every night. If you wake up at night then plan extra time for sleep.
  7. Get your body moving every day! This may not only help your fatigue but also your chronic pain, poor sleep and depression. Start with 5 minutes of aerobic exercise daily (e.g. walking, biking, running, elliptical, treadmill) and increase the duration by an additional 2-3 minutes each month up to a maximum of 25 minutes daily. If you have a heart or lung condition, consult your doctor first.
  8. If you are still employed, ask your employer for accommodations because you have a medical condition. Try to work from home if possible to gain more flexibility with your work routine. Check the following resources (search "chronic fatigue") to get more information on work accommodations and/or career options:
    1. Job Accommodations Network (www.askjan.org)
  9. Identify the major stressors in your life and work with a mental health professional or your support system to minimize their impact
Relieving Constipation Naturally
  • Get adequate rest and relaxation. Try to avoid nervous tension.
  • Eat a balanced diet including fruit and vegetables. Be sure to include enough fiber (at least 20-25 grams per day). Enjoy meals in a leisurely manner.
  • A convenient way to increase fiber is to eat high fiber snacks available at the pharmacy or supermarket. Consume these snacks along with one large glass of water or milk.
  • One teaspoon of unflavored Regulord or unflavored Metamucil in one large glass of juice daily can also be helpful in increasing fiber content
  • Some moderate routine exercises can help tone up the whole body and the "sluggish" bowel, too.
  • Establish a regular time for going to the bathroom.
  • When the urge to move the bowels occurs, don't put it off. Take all the time needed for comfortable elimination.
  • Drink enough fluids. In addition to the other liquids normally consumed, try to drink six to eight, 8-ounce glasses of water each day. Check with the physician if fluid intake has been restricted for another reason.
  • Ask the doctor to discontinue or substitute, if possible, any medicines that may cause constipation.
  • If there is any sudden, unexplained change in bowel function, change in color or size of stools, or if constipation persists or recurs frequently, consult a physician.
Simple Solutions for Treating Dry Mouth
  • Chew Trident™, Biotene™ or other sugarless gums. Suck on sugarless hard candies (e.g. Sorbee™, Velomint™, Breath Savers™), ice cubes, fruit pits or lemon rinds. Stimulation of the sucking or chewing reflex increases saliva flow.
  • Eat smaller, more frequent meals to stimulate saliva flow.
  • Stop cigarette, cigar or pipe smoking. It can irritate the mouth and cause numerous other health problems.
  • Avoid the use of mouthwash, fluoride rinses or beverages containing alcohol or witch hazel, which can aggravate mouth dryness. Try Al-Free™ or Biotene™ mouthwash.
  • Minimize time spent in air conditioned (dehumidified) environments such as offices, supermarkets, airplanes, and so on.
  • Use a humidifier in the room at night during fall and winter months when the air is dry, especially October-April. The target humidity level should be 60 percent. This is particularly helpful for people who experience dryness at night or upon awakening each morning.
  • Increase the intake of liquids during the day. Sugarless beverages (e.g. diet soda) work best for many people.
  • Try artificial salivas like Mouth Kote™ or Optimoist™. Use two to three squirts in the mouth every hour while awake. Do not spit out; these preparations are safe to swallow.
  • Spread vitamin E oil on the tongue and inside of the cheeks after meals and before retiring at night. Use the liquid preparation or punch a hole in the capsules and empty contents into mouth. Apply Oral Balance™ (moisturizing gel) or Borofax™ (a lanolin-based emollient) to dry or sore parts of the mouth or tongue two to three times per day.
  • Ask the family doctor to discontinue all medications that may cause dry mouth. A suitable substitute without this effect can often be found.