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Explaining Fibromyalgia to Friends Who Wonder Why They Don't Hear From Me

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Dear Friend,

You may ask, “Why haven’t I heard from you in years?” Well, I’ll tell you why. Because I’ve been dealing with this condition called fibromyalgia. It’s a chronic condition, meaning it will not go away nor is there a magic drug/herb/diet that will take it away. It causes widespread pain. For me, some days the pain is manageable. It’s dull enough to get through the day without too much discomfort but just enough to remind me I’m not healthy. Other days, the pain comes in the form of throbbing, burning, tingling, pins and needles pain that can occur from sitting too long, standing too long, climbing too many stairs, walking too fast, lying on the couch in the wrong position or just a change in the weather.

It also causes major fatigue and sleep problems. Did you know many people with fibromyalgia get very little deep sleep? Our brains do not fully “power down” so at night, while you’re having wonderful, restorative, reinvigorating sleep, I’m tossing and turning like a fish out of water, trying to find a comfortable position that will not make my body feel like it’s being subjected to a horrible acupuncture experience. I go through each day as if I’m walking in quicksand. I want to do so much but the fatigue keeps pulling me down until I just don’t care anymore and let it swallow me up.

Have you ever heard of the phrase “fibro fog?” Well, because of our lack of deep, restorative sleep, we develop things like brain fog and short-term memory loss. Have you ever tried to stay awake for 24 hours? Imagine the mental exhaustion: you’d be irritable and cranky, have trouble concentrating and you might even forget where you put simple things like your keys or a grocery list. Well, fibro fog is like living every single day like you’ve been awake for 24 hours. I feel like my brain is on a delay. I see and hear what’s going on around me at normal speed but I can’t respond at the same pace. I’m in a fog. I can read words on a page or a screen but can’t make sense out of it. It’s like I’m reading a different language. I can’t figure out simple things, like which way to turn my tablet cover to become a kickstand. I have the attention span of a gnat and the memory of a goldfish. If I didn’t write things down or turn my Google calendar notifications on, I’d forget every appointment I make for myself.

Depression and anxiety are also close friends of fibromyalgia. While I’m still not sure if I currently deal with or will ever deal with these conditions, I can tell you one thing for sure: fibromyalgia can make you lonely. People may tell you fibromyalgia is not real. They may tell you doctors only gave you that diagnosis because they couldn’t find anything wrong with you. They may give you all types of remedies and offer unsolicited medical advice. They may also use your experience as a platform to talk about their problems and constantly make you feel like what you’re going through is not nearly as bad as what they’re going through. They might look right at you, see the bags under your eyes, and proceed to tell you what a horrible nights’ sleep they had and how you could not possibly know how tired they feel.

This, dear Friend, is what I’ve been dealing with. So please, before you think I’ve forgotten about you or don’t care how you’ve been doing, try to understand my situation. Life hasn’t been easy for me. I don’t mean to sound selfish, but I’m learning to put my health first because frankly, no one else will do that for me. So answer me this: if you really want to know how I’m doing, why are you waiting for me to call you?

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Thinkstock photo by evgenyatamanenko

Originally published: March 2, 2017
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