Sjögren’s, Beverages, & Weight


I have Sjögren’s Syndrome. My white blood cells attack my salivary and lacrimal glands, creating chronic and extreme dry mouth and dry eyes.  In my case, I also suffer from extremely dry skin, which has been attributed to the disease, since no other cause has been found to explain why my skin gets so dry it physically hurts.  It is Primary (not related to any other autoimmune disorders) and probably the result of my PCOS, since PCOS creates a low estrogen environment and high autoantigens which can cause the disease.  On top of this, I take clonazepam daily, a medication known for causing chronic dry mouth.

I’ve tried Biotene and other medications that are supposed to reduce chronic dry mouth.  I have tried Restasis for dry eyes.  None of it has helped.  So, I don’t treat the symptoms and I continue on with life, giving them very little thought.

However, I drink a ton.  When I say this, people think “oh, so you drink about 70 ounces of fluid a day, that’s a lot.”  Um, no… I drink about 100 ounces of fluid a day.  Honestly, it’s a big contributor to my being overweight.  The one time I became dehydrated, I lost fifteen pounds in less than 2 days.  Should some unthinking doctor shove an IV in my arm and start pumping me full of saline solution, it takes less than three hours for my hands to swell so much, that my fingers can’t bend and the skin begins to ache from the stretching… They refer to it as “hyper-hydration syndrome.”

Back to the point.  I do drink a ton of fluid, most of it in the form of soda.  There’s a reason for this: I’m allergic to milk (although, I do love it), fruit juices make me feel sick (my stomach has issues), and water tastes like sucking on dirty pennies.  Tea is just sucking on dirtier pennies.  My other big allergy is to metal.  And having spoken to several people who are allergic to metal, I have discovered that we seem to be hypersensitive to the taste of minerals in water, tea, and coffee.  None of my metal allergy compadres drink these beverages.  It is very hard to drink distilled water, I’ve tried.  Even cold it is a strange taste.  I don’t enjoy milk substitutes (Silk, Goat’s Milk, etc).  So, there isn’t a whole lot left for me to drink.

But if I don’t drink, I pull the skin off my lips when I go to talk, because my mouth is so dry, my lips stick to my teeth like they’ve been super glued.  If I don’t drink, my tongue actually feels like it is swelling and it becomes hard to move it.  If I don’t drink, it feels like my mouth is full of sand and it does have a gritty dryness that is unpleasant at best.

Doing the math is depressing.  Since I drink around 100 ounces of fluid a day (sometimes a lot more), I get about 1500 calories from my drinks alone (even switching to something like V8 Splash, I still get 1000 calories a day from drinks).  That means it doesn’t matter how healthy my diet is, I am getting way too many calories.

And everyone knows the solution: Drink more water, there’s no calories.  So, do this: Reach into your pocket, grab some change, stick it in your mouth, and start drinking water.  Then come back and report how many ounces of water you managed to drink with the change in your mouth.  To me, water even smells like pocket change.  How does one drink something that smells like pocket change, let alone tastes like it?

So, my exercise routine is going to have to include a way to burn that extra 1500 calories a day… Ouch!

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2 Comments

  1. Julie

     /  April 27, 2016

    I am so glad to read what you wrote. I am allergic to metals. The only jewelry I can wear is gold and it has to be at least 14K gold. I can tell you some horror stories on my allergies. A doctor put silver nitrate on me and never asked me if I was allergic to silver. The end result is tissue necrosis really bad. I drink a lot of water but not plain water. I get little packages of flavoring that I put in the water. The one that I can drink is the orange one. I can’t stand the rest of them, they either taste way too sweet and it makes me sick or the other ones taste nasty. The orange ones are great. I don’t get the calories from drinking other things. It helps drinking it this way cause. To drink plain water it has to be very cold, then I can do it but it makes my stomach upset because I drink so much. It is like I become water logged. but I need the water because my mouth is so dry and without it my throat gets dry and closes up and then I can’t swallow or breathe… Putting this stuff in it helps. The only time I can drink water or have a problem with the orange stuff in it is when I am outside working. I have a farm and I get out there and I am pulling weeds. It is not like I am working exhausted, it is that I am sweating a lot. When the orange stuff is upsetting my body, I switch to the water and that is the only time I can drink it. I guess I lost too much water. My body is funky about that. I get a very upset stomach for all sorts of things. I can’t drink juices at all or else I will get sick. The only time my body will accept it is when I need vitamin C badly. I drink on the average 4-7 liters of fluid a day. I am well past the point of counting ounces. I guess that is 135-235 ounces a day. Most of the time it is about 135-180. I know it is insane but I need the water. My doctor doesn’t believe I am drinking that much water. That is my assumption. He tells me to drink more water and eat more fiber. I have really bad constipation. My eyes are dry all the time and it is worse when I am in any air conditioned building. I do much better when I am at home and the air conditioner system is off. I say the same thing about my car. I need to keep it off. When the air is too dry my skin and eyes are even worse. However there is no way to fix my eyes. I need my doctor to start testing me because I feel like my body is falling apart.

    Julie

    Liked by 1 person

    Reply
    • Sjögren’s causes dry mouth, chronic dry eyes, dry nasal linings and passages, extremely dry skin, and sometimes can cause lady bits to be abnormally dry. I’d say if you consume that much fluid and are still thirsty it is most likely autoimmune, like Sjögren’s, thyroid problems, or diabetes. A rheumatologist can test for Sjögren’s. There is nothing they can do for Sjögren’s, unlike a thyroid or pancreas problem, but at least you’d know you had it.

      I’m even allergic to gold at 24k, so I feel your pain. I’m also allergic to artificial sweeteners, which is why I can’t use any flavor packets or drink any flavored waters on the market. It’s a battle with Sjögren’s to also be allergic to metal. Everyone I know with a metal allergy complains about the taste of water.

      You are not alone.

      Like

      Reply

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