I’ve written a lot about my disease, a lot about how sarcoidosis impacts my life. But I don’t think I have ever written about one of the oddest symptoms I experience and perhaps one of the most obnoxious. I smell strange things! I smell strange things all the time. My husband often says that my “sniffer” is broken because I smell things that are not there. I smell the invisible. It’s my not so super power.
I smell cigars and no one in my house smokes. I smell cat pee and we don’t have a cat. I smell all manner of the most unpleasant smells that simply don’t exist. Well, they exist but just not where and when I am smelling them. See why it’s not such a super power. Very annoying!
And, since our sense of smell is highly connected to our sense of taste, food doesn’t taste that good to me anymore. In fact, between the smells and the side effects of my medication almost everything I eat and everything I taste has a metal or mildew flavor to it. Or at least what I would guess mildewy metal tastes like, if I were ever to eat such a thing! Yuck!
One of the symptoms of sarcoidosis is a loss of appetite that is often accompanied by unintentional weight loss. Well…duh…no wonder! If everything smells foul and food tastes like metal then it makes perfect sense that eating is no longer a pleasure.
My strange sense of smell has become something of joke in our house. I’ll get so mad because I think the dogs rolled in some dead animal outside or they farted or my husband farted or someone, hopefully not me, has body odor. And none of these things will be true. It’s just me smelling my invisible smells. It’s so frustrating.
There are times these smells keep me awake at night because they are so powerful. How vexing is that? Augh! Last night was one of those nights. All night I smelled a dank, heavy, moldy, smokey smell. Sometimes it is so bad I nearly gag.
I can’t get these smells out of my nose until they decide to go away. I can’t get rid of them until as suddenly as they showed up, they dissipate. It makes me feel like I am a crazy person. I don’t need any thing else to make me feel crazier than I already might be! I mean really, why can’t I have a real superpower instead!
It’s just plain maddening!
That is too funny in that my phantom smells are perfumes, food and flowers. Good to know I am not crazy. Happy its good smells tho. 🙂
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Man I wish my smells were perfume and food and flowers! LOL!
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I thought I was going crazy, so glad to know that someone else smells things like cigars and musty and other nasty things and these things are not real to other people.
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It’s a symptom of the disease. It has to do with inflammation in the nervous system…so says my doctor. I smell cigars, dirty socks, BO….you name it….all things nasty!
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Chemo affects your sense of taste too — could be impacting it. Everything tasted like metal when I was doing it.
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Yes, I am sure the MTX is causing the metal taste. The sarcoid is causing the smells though…it’s a bad combination!
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Then I hope that in 2015 you will discover and develop a nice super power of yours.
By the way, maybe your superpower is to share how you go through sarcoidosis so that people who have it know that they’re not alone.
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Why thank you! Maybe it is!
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Your super power is that you make the best of things in spite of infuriating symptoms like this!
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Thanks Betty! I try…not always successfully but I do try! This smelling thing seems worse lately. Not sure why…very annoying.
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I’ve be pre-diagnosed with sarcoidosis, and I have this “bionic” sense of smell too! Have you ever been told why this strange change in smell has occurred? It is not listed anywhere that I have found as a symptom…..
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Hi TJ – No idea where the weird smell thing comes from but just about everyone I have ever talked to with sarcoid has it.
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Me too…
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Isn’t it so annoying!!! :.)
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