7 Tips for Living with Sjögren’s Syndrome

April is Sjögren’s Awareness Month, and I am posting about it with only a few days to spare! To explain what this illness is I will leave it to the pros at the Sjögren’s Syndrome Foundation.

“Sjögren’s is a chronic autoimmune disease in which people’s white blood cells attack their moisture-producing glands. Today, as many as four million Americans are living with this disease.”

Signs of Sjogren's Syndrome
I was diagnosed with Sjögren’s Syndrome in 2004 after waking one morning with my eyelids glued shut. It was terrifying at first, as I believed blurry vision would be my new way of life. Luckily, however, after my Ophthalmologist placed punctual plugs in my tear ducts, the dryness in my eyes improved. I still deal with dry, red eyes when challenged by fluorescent lighting or dry environments. And, I struggle with dry mouth and fatigue regularly. Yet, after a decade of living with this disease, I have uncovered many tips and tools for dealing with the dryness. I am happy to share them with you.

Dealing with Dry Mouth & Dry Eyes

1. Invest in A Portable Water Bottle

A good quality, “safe” water bottle is essential when dealing with dry mouth. When I say “safe” I mean BPA-free so you are not getting any unwanted chemicals, and easy-to-clean, so that it doesn’t harbor bacteria. Some of the narrow-mouthed bottles are so difficult to clean that they simply aren’t an ideal solution for long-term use. My favorite bottle is Camelbak’s “Eddy” model (which I have purchased at Target and Vitacost). It is virtually spill proof and has a sturdy, built-in carrying loop. Plus, its unique bite valve means you don’t even have to tip the bottle making it much easier to avoid spilling on yourself (a problem that admittedly happens far too often when I use my other favorite bottle from Klean Kanteen.)

2. Drink Only Sugar-Free Liquids

One of the biggest challenges of living with a dry mouth is that it puts your teeth at a serious disadvantage. Saliva protects our teeth and gums, and when there is not enough, cavities and gum disease can result. One of the best strategies to protecting your teeth is to avoid sugar, particularly sticky, gummy candies (which sadly are my favorite!) which can stay on the surface of teeth. The same is true for sugary liquids. Sipping anything with sugar exposes your mouth to a constant flood of that cavity-causer. Sticking with water, lots of it, is the best choice in maintaining a healthy mouth.

3. Keep Your Mouth Moist

Keeping your mouth as moist as possible is probably an obvious solution to dealing with dryness. But, what is not so obvious is how to achieve this when the very nature of Sjögren’s means that you don’t have enough saliva. Sometimes you must take artificial means to get the job done. Chewing sugar-free gum really seems to help keep saliva flowing, particularly when a water bottle is not nearby. Sugar-free lozenges designed for dry mouth can be particularly helpful too. I often use Xylimelts, which adhere to the roof of the mouth. I get these from Swanson Vitamins. At bedtime, I rinse with Biotene mouthwash and sometimes put a little Biotene gel on the roof of my mouth. I buy both products at a discount from Vitacost.com. Finally, I have taken to oil pulling on a regular basis. It is an Ayurveda treatment of swishing oil (sesame or coconut) in your mouth for 5- 10 minutes or longer. The oil is reported to help detoxify the mouth, while coating and soothing the dry tissue.

4. Limit Caffeine and Alcohol

Caffeine and alcohol are diuretics, which mean they make you lose water. Not the best choice when moisture is what you are after. I still love my wine and coffee, but I have noticed that my eyes and mouth become drier when I consume too much of either, so I make an effort to chase both with a little extra water. It also doesn’t hurt to increase my daily supplement of fish oil when I know that I am having an extra dry day. More on that up next.

5. Add Anti-inflammatory Foods and Supplements to Your Diet

Every illness has a component of inflammation to it, since that is the body’s natural response to attack whether it be from an injury or a foreign invader (like a virus or bacteria). Autoimmune conditions are particularly inflammatory in nature as autoimmunity is when the body’s immune cells attack its own healthy cells. In essence, autoimmune disease means that an individual is consistently in an inflammatory state. That is why the most effective treatments for autoimmune flare-ups are anti-inflammatory agents. There are medications that serve that purpose, but they tend to have serious side effects. Fortunately, there are many, wonderful foods and supplements that naturally carry anti-inflammatory properties such as:

  • Foods with Omega 3 Fatty Acids – salmon, ground flaxseeds, chia seeds, fortified eggs.
  • Fish Oil Supplements – The fish oil I take is from Carlson (Elite Omega-3 Gems) and is especially high in EPA & DHA.
  • Spices – turmeric (curcumin), ginger, garlic, saffron, cinnamon, etc.
  • Green Tea
  • Cherry Juice or Dark Cherries
  • Pineapple (bromelain)

This is by no means an exhaustive list. In general, most fruits, vegetables, and richly colored plant foods are high in the antioxidants that help to fight inflammation and oxidation.

6. Avoid Inflammatory Foods

The Standard American Diet (SAD) is unfortunately very high in foods that cause inflammation. The biggest culprits tend to be trans fats, saturated fats from animal products, sugar, white flour, and dairy. Gluten (from wheat, rye, oats and barley) also tends to be inflammatory, particularly for those with Celiac Disease. There is also some indication that the nightshade vegetables (peppers, tomatoes, eggplant, potatoes, and cayenne) negatively impact certain individuals, particularly those who have arthritis or joint damage (a potential symptom of Sjögren’s). Keeping a journal of the foods you eat will enable you to make the connection between what you eat and how it makes you feel.

7. Use Eye Drops & A Warm Washcloth

When I was first diagnosed with Sjögren’s and my eyes were particularly sore and dry, I used artificial tears daily. In fact, I always kept a bottle of Systane or Similasan Dry Eye Relief on hand. However, as time has gone by, and I have gotten better about watching what I eat, my eyes have greatly improved. Likewise, a few years ago after learning about the homeopathic eye drop, Optique 1 (by Boiron), from The Graduate Institute Instructor, Dr. Lauri Grossman, my eyes really seemed to improve. [Again, I buy these drops from Vitacost or Swanson Vitamins.] Still, there are times when all my eyes really need is a rest. When that is the case, I soak a washcloth in warm water, lie down, and rest the warm, moist cloth over my eyes. A very simple solution, but a relaxing and rejuvenating one that works.

Sjögren’s Syndrome is undoubtedly a challenge. As with any autoimmune condition, and life in general, it will bring good and bad days. The trick is to work with your body, use the natural tools around you, and most of all give yourself the time to rest and recover when needed.

Learn More

Need more information? The following sites can help:
• Sjögren’s Syndrome Foundation – www.sjogrens.org
• Reasonably Well – Living Well With Sjögren’s Syndrome – http://reasonablywell-julia.blogspot.com/

14 thoughts on “7 Tips for Living with Sjögren’s Syndrome”

  1. My name is Vicki and I have Sjogrens,having a hard time controlling it right now,but reading this helped me a lot
    Thank you so much for the information.Going to try some of it.

    1. Michelle Traub, M.A., R.D.

      Hi Vicki! Thanks for commenting. I’m sorry you are having a tough time right now. I find that my Sjogren’s tends to calm down for stretches. I hope that happens for you. Anything that can decrease inflammation (stress relief, fatty acids, spices) can really help minimize symptoms. Best of luck!

  2. Hello Michelle, I was looking for some remedies for dry mouth which I have because of Sjögren’s syndrome and was very pleased that I chanced on your post which specifically answers my questions. Thanks for this post.
    Just browsed through your website and I feel it has lot of fantastic information to offer for self help. I need to make more time to read through. Needless to say I will be a regular visitor.
    Best wishes
    Preeti

  3. Hi
    As with most things in life, I stumble onto a direction when the universe has had enough of me not seeing all the signs provided. That being said, I’ve heard of this Sjogrens but never paid any attention(I also don’t do Allopathic doctors). I first noticed my hands in about 2002. In about 2009, I had the worst flare I had ever known…by trade I’m a body worker/energy worker so my hands are my livelyhood. At the time of the flare, just looking at my hands would hurt. This went on for about a month. The only relief I could find then was rest, Core Synchronism (an energy modality) and Joint Juice. Since 2010 I’ve stopped Joint Juice and replaced it with Tumeric, Bromelain, and Gelatin( collagen had 0 effect) everyday…it’s been my salvation most of the time! At about the same time I began having the worst dry eyes too…I chalked it up to living in Albuquerque, NM but there you are NEVER away from your Klean Kanteen so staying hydrated is like breathing. I began with the Similisan drops but moved to Optique. I’m also THAT PERSON when it comes to oral hygiene and yet I am constantly battling a crumbling mouth. I’ve never noticed my mouth being terribly dry but there are definitely times when it bothers me. Every now and then I’ve had an episode of what I thought was an esphogeal spasm. It would pass and be years until the next one( I remember my mother saying she had a hiatal hernia). About 2 weeks ago I thought I was going to choke and was home alone…freaked me out! Since that day I have had many mini episodes so I’m very careful now. I’m GF aware but not Celiac so limiting refined flours, sugars, fats, etc are second nature. I used to live on lemon water but gave it up about 3yrs ago and have recently returned to it, craving it again. So, finding an article today on Facebook has landed me here looking for some answers and comfort.
    By the sounds of it I’ve been doing many of the helpful things intuitively but finding this article gives me great comfort that I may be on to what’s happening and that I’m not making this up.
    Thank you, thank you, thank you!!
    Lisa

  4. Dry Eyes
    I have been diagnosed with sjrogens also. About 9 years ago I started getting very dry eyes and would use systane daily. I then discovered in Traditional Chinese Medicine TCM – that eyes and liver are linked. So that if your liver is overburdened it will negatively affect the eyes.
    So I started taking Greenridge Liverplex tincture. Almost immediately the redness and dry eyes started improving. I stayed on the tincture for several months and have not had a problem since – in the past 8 years.
    I think Greenridge is now owned by Thompsons and it looks like Thompsons Liverplex is the replacement.
    I continue to take liver detox or support supplements regularly. So important in our world with so many toxins being unavoidabel.
    Hope this helps
    Jane

  5. Hi I was diagnosed with Sjogren’s Syndrome last year. I want to know which medication worked best and if any herbal medications worked. Also, did anyone make changes in their diet due to Sjögren? Any kind of recommendations would be appreciated!

    1. Michelle Traub, M.A., R.D.

      Hi! I personally never found any relief in the conventional medications that were offered (plaquenil, exovac, etc.). But, I do feel like my symptoms have improved with the dietary suggestions in this post. There is also a homeopathic remedy called Hyland’s Bioplasma Cell salts that seems to help too. Best of luck!

    2. I also was diagnosed with sjogrens in 2004.. had no idea what was going on with my body,. along with the dryness of eyes and mouth I have body pain constantly. My treatment is methotrexate 4xwkly along with folic acid.. I have some good days, but my hard days really causes a struggle. I’m seeking for a natural remedy for this disease.. some meds can be very toxic to the body.

  6. Hi. I’m so glad I came across this page. I have not been diagnosed….but I definitely feel that I have developed Sjogrens. About 10 years ago(give or take) at my yearly optometrist appointment, the dr noticed that I have the red butterfly rash on my face….I have had this rash as long as I can remember. Also at that time my eyes were so dry that they burned like fire and I could not be in the sun at all without having a hat or sunvisor on. He mentioned Sjogrens to me and asked if I had heard of it. My older sister has this along with Lupus. I made an appt with my family dr and had her run blood tests to check for this. The tests came back negative, however she explained how hard it is to diagnose an autoimmune disease.

    Now for current issues…..Almost 2 months ago, I developed a rash on my left arm that ranged from my elbow up to my shoulder and also on the side of my breast. Since my pet had a bacterial and fungal infection at the time, I was concerned that I had caught this from him. I went to Physicians Care and the dr told me that it definitely was not bacterial or fungal. But she had not idea what it could be. She gave me a steroid shot and said if it didn’t clear up on its own, she would refer me to a dermatologist. It did not go away on its own. A week or so later I had an appt with my ob/gyn due to increased anxiety issues. She also did not know what it was…..maybe anxiety rash??? She gave me a steroid cream to use and it still did not clear up. I still have this rash, and it now has spread to my right arm. Also for the past couple of weeks my eyes have been severely dry, waking up to crusty eyelashes and redness and soreness around the corners of my eyes. I use eye drops that help some, but not completely. My nose is overly dry and my mouth has become dry….I have to keep something to drink with me at all times.

    I also was diagnosed with chronic fatigue syndrome several years ago because the dr could not associate it with anything else. So, I have an appt with a dermatologist next week to see about this rash. Should that be my first step in diagnosis or should I begin with my family doctor?

    1. Michelle Traub, M.A., R.D.

      Hi Hope, To answer your question right up front – yes, I do think you should see your family doctor first. They have a better sense of your history than a new specialist would. I’m of course not a doctor, but the symptoms you have indicated sound a lot like lupus. The butterfly rash and the fact that your sister has it, makes its quite likely. I have exhibited symptoms of lupus myself, but never had the rash. That is one of the primary reasons that I was diagnosed with Sjogrens instead. The two conditions are very similar. Regardless, the best defense for preventing symptoms is to try to decrease the inflammation in your body. That is primarily managed through stress relief techniques (https://happyhealthyher.com/mind-spirit/) and a healthy diet (like mentioned in the post). Here is more on lupus: https://www.lupus.org/resources/common-symptoms-of-lupus . Skin rashes sometimes occur because of food intolerances – gluten and dairy are particularly likely to cause that reaction. It could be helpful to try a gluten-free diet just to determine if that helps. Oh, and if you have a Naturopath in your area you might want to make an appointment. They are much more knowledgeable about autoimmune conditions than conventional doctors tend to be. You can find naturopaths here: https://naturopathic.org/search/default.asp I hope this helps. Best of luck!

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