What hockey players and cowboys can do that I cannot…

Last year during Sjogren’s Awareness Month I posted about dry mouth symptoms. People suffer from dry mouth for a multitude of reasons. For those of us with Sjogren’s, dry mouth occurs because our own immune system attacks the moisture producing glands throughout our body, including the salivary glands. We need saliva as it has antifungal and antibacterial properties, in addition to buffering capabilities to neutralize the acid in the mouth which causes cavities.

Saliva is the moisture that is in our mouth. Some refer to it as “spit”. I won’t perpetuate any stereotypes by naming who those people might be. 😉 (Okay, changed my mind about that, when I needed a title for this blog post!) Anyway spit, or saliva, helps protect both our teeth and mouth. In addition it is the important first step in digestion as it begins the process of helping us break down food and sends it down our esophagus to our stomach. Okay, so that’s my basic biology class, human anatomy digestion 101 lesson for today.

In earlier posts I mentioned waking in the morning to painful tight muscles, stiff achy joints, and eyelids glued to corneas causing discomfort or even pain; well you can add dry mouth to my list of first symptoms of the day.

If you’ve never experienced severe dry mouth, you might think it is just a matter of being thirsty and the solution – having a long sip of water  – doing the trick. It is much more complicated. When I wake up in the morning my tongue is usually stuck to the roof of my mouth, my cheeks stuck to the sides of my teeth, and my throat often feels as though it is closing. My mouth feels parched. I am also thirsty upon waking, so I do drink water first thing when I get up to “unglue” my cheeks, tongue and throat as well as quench my thirst.

Sometimes when I wake up I discover I have developed painful mouth sores or ulcers. These are not a symptom of Sjogren’s according to my current Rheumatologist, but of Undifferentiated Connective Tissue Disease which I also was diagnosed with. Usually they occur on inside of lower lip, side of cheek, or on very back side of palette / roof of mouth. Typically they last a few days, although some are more persistent. Actually my Rheumatologist is incorrect, they are often yet another symptom  of Sjogren’s . As if we don’t already have enough pain and need more in an already uncomfortable dry mouth.

There are numerous dry mouth products available, none of which I have been too enthused about. Every mouth is different and each patient needs to try out the myriad of products to see which suits them best. There are prescription medications to stimulate salivary flow; however I am not prepared to risk the side effects of them, preferring to take my chances with meticulous dental hygiene and sipping water throughout the day.

(Please remember that none of the information I have been detailing in my blog about Sjogren’s is a substitute for medical advice. Please ensure you seek professional medical advice from your own Dentist, Doctor, and other professionals. I am strictly relating my own personal experiences.)

One thing I found to stimulate some salivary flow is massage. There are people who go specifically for massage and / or acupuncture to increase flow of saliva however you must go to someone with intensive training in the technique; unfortunately those people are few and far between. However, I have found during a regular massage, as the therapist works with lymphatic drainage technique and upward strokes of the hands up my neck and jaw I often experience what I can best describe as two miniature water fountains turning on at the back of my mouth near the jaw line. After being so dry, the feeling of sudden spurting of water in the back of one’s mouth, albeit for seconds, is wonderful.

Beyond being uncomfortable, the risks of having an extremely dry mouth include high risk of tooth decay resulting in loss of teeth and necessity of implants or dentures. The protective qualities of saliva being absent is one reason for this, another is that without saliva food adheres to the teeth easily.

Imagine eating one small cracker and trying to swallow it. Instead of it disintegrating in your mouth, and you swallowing the entire piece you instead end up with more than half the cracker stuck onto your teeth. Well, first of all with Sjogren’s you usually cannot swallow any of the cracker without water, but even after you drink the water, the rest of the cracker stays stuck on your teeth. Sometimes, even when brushing with an electric toothbrush, the food stays stuck so it takes multiple brushings to get it entirely removed. I have worn out more than a few electric toothbrushes.

Another more frightening risk of living with next to no saliva is choking on food particles. When I eat (as you can imagine as I described the food debris left behind on teeth) I don’t have saliva in my mouth to help wash food down my esophagus, so often a tiny particle of something (especially lettuce or tiny carrot particle for example) adheres to the tissue on the very back of my mouth or even in my throat. Often it is so tiny I don’t even feel it until it suddenly dislodges and I start to choke on it as it is going where it shouldn’t be “down the wrong way”, or goes part way down my esophagus then gets stuck again farther down. In Sjogren’s lack of moisture is often an issue throughout the entire body including the esophagus. The coughing episodes that follow as my body rids itself of the particle of food is not fun for me, nor has my family become used to it no matter how many times it happens.

Coming next post: a lighter look at dry mouth – because sometimes you just have to laugh at yourself.

If you wish to read previous posts I have written about my dry mouth experiences here are the links below, as well as a link to dry mouth info from the Sjogren’s Foundation:

Causes, Diagnosis, + Treatment of Dry Mouth

My post from last year: “If you can swish or spit, celebrate!”

Older post re: my diagnosis / dry mouth: “A Diagnosis that is Hard to Swallow”

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