Sjögren’s is a systemic issue, so dryness issues are felt throughout the entire body.

[editor's note: This Self-Help booklet was written in first-person by Sjögren’s syndrome patient Dona Frosio]

Click on the links below to read about some tips for dryness issues that go beyond the hallmark symptoms of Sjögren’s:

 

Living With Dry Skin

Sjögren’s is a disease that produces dryness in many areas of our bodies. It is not surprising that we have very dry skin as well. Your dermatologist can be your best ally and may be able to give you samples of products to try. Here are some basic survival tips that may help:

  • 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.
  • Terry robes will dry you gently.
  • Use warm, not hot, water for bathing and use soap sparingly. Apply lotion as soon as possible to seal in moisture.
  • Shampoo might be drying to the rest of your body in the shower.
  • 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.
  • When getting out of the shower, let yourself dry naturally since the moisture from the water will be absorbed by your skin.

 

Living With a Dry Nose

nasal dryness varies from person to person.

My stuffy, runny, dry nose bothered me most when I tried to sleep. If you have nasal problems, discuss them with your physician. While not everything that goes wrong in your body is Sjögren’s related, some things are.

Saline spray is generally considered safe and gives a lot of relief, albeit for a short duration. There are many brands on the market, or your allergist may be able to give you instructions for making your own. There are also saline nasal gels which helped me clear up the nasal sores I used to get from dryness.

I found that nasal lavage gives me the longest lasting relief. I do it at least once a day, and my nosebleeds have stopped since I have been using this method. My allergist gave me instructions for lavage and they are included below.

Instead of using a bulb syringe, you may prefer using a sinus rinse bottle such as NeilMed®. I use the bottle and make my own solution from the recipe below. Waterpik® also makes an attachment tip for sinus rinse. Don’t forget that a humidifier not only relieves nasal discomfort but also may help with other dryness problems too.

Below is the salt water nose rinse method as supplied by Kaiser San Diego, Allergy Department:

nasal irrigation with bulb syringe

Materials needed:

  1. Soft vinyl bulb syringe 2 to 3 oz. capacity. Purchased for about $3.
  2. Salt water solution
    1 cup body temperature water (lukewarm)
    1/4 teaspoon table salt
    1/4 teaspoon baking soda

Directions for use:

  1. Fill bulb with salt water.
  2. Place face directly over a sink and look straight down at the sink.
  3. Place tip of bulb just inside of one nostril and squeeze the bulb gently. The salt water will fill the nostril and then go through a hole in the back of the nose and run out of the other nostril. If you are facing directly down toward the sink the water will not run down your throat. Do not force the salt water. Stop if there is significant pain.
  4. Repeat the procedure on the other nostril using remaining solution.
  5. This procedure may be repeated as often as it is helpful (2 to 3 times a day).
  6. If steroid nose sprays are also used, apply after rinsing.

 

Living With Dry Ears

Of all the problems with dryness, itching ears has been the easiest to deal with.

One drop of earwax remover or mineral oil stops my problem for a week at a time. However, I caution you to check with your physician to see if you have another problem such as an infection in addition to Sjögren’s. It’s always important to remember to share any symptoms you are having with your physician so that they can have a complete picture of your disease.

 

Living With Vaginal Dryness

Vaginal dryness can be caused by Sjögren’s as well as by other conditions such as menopause. No matter what the cause, if you are experiencing it, talk to your gynecologist. He can help discuss various options with you and help you make a decision as to the best treatment. Often an over-the-counter lubricant such as K-Y® Jelly, Astroglide®, Replens® or Feminease® may be all you need.

Hormones are a controversial topic and it is a personal choice. You will have to weigh the pros and cons with your gynecologist. Don’t be afraid to bring up the subject. You know what you are experiencing.

 

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Smiling woman running up a flight of stairs