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To the Person Who Told Me Fibromyalgia Doesn’t Exist

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I may not be able to explain what fibromyalgia is. I’ve heard it’s a muscular thing, a nervous system thing and a genetic thing. But for me, it’s a real thing.

I’ve been dealing with it for the past four years when the symptoms started a few months after my first depressive episode. All of the sudden, at 18, I was exhausted. I had no energy, I found myself sleeping more often and keeping up with life and daily activities were way too much for me.

If I went out one night, I had to spend the rest of the weekend recovering from the exhaustion that it caused. I could sleep for 12 hours and still feel like I’ve been sleep deprived for three months.

And the fatigue — oh, the fatigue. Have you ever felt tired after taking a shower? I have. You can’t imagine how much energy you need to stand up on the shower while using your arms to apply shampoo and wash it all off. It’s an immense effort.

When the shower is finally over, you have to decide what to clothes to wear and put them on. But you’re exhausted, like you just ran 50 marathons. So you just sit on your bed, looking at your closet and wishing tiny fairies would pick up your clothes and dress you while you just rest there.

Clear? OK, let’s continue because we’re far from being over.

Imagine having your skin covered in dark, purple bruises. They’re the kind you get when trip over a desk, and they hurt just by touching them. Yep, those. Now imagine one little kid per bruise, touching it, poking it and pressing it with a tiny but strong little finger — all day long and all over your body.

In addition, imagine your body covered in needles that randomly pressed into your skin. It makes you feel like you have a thorn somewhere in your muscles. As every part of your body is in pain, but you can’t locate the pain, and you aren’t comfortable in any position. Your legs can’t stand being up for a long time, but when you sit down, your back hurts. And when you lie down, your arms hurt.

I forgot the stiffness. Your muscles feel like they were replaced by concrete overnight, and you can barely move. And it hurts. So you have to use your magic gadgets — a cane in my case or a wheelchair for others.

Amazing, I know.

Let’s continue to the cognitive part. In addition to all of that, you start forgetting things. You forget where you are, what you were going to do or what you just said. You have trouble concentrating and your memory sucks.

How could I forget to mention fibromyalgia’s BFFs: depression and anxiety? And this story cannot end without mentioning dry mouth, the swelling of legs and feet, migraines, oversensitivity to light and sound, body temperature issues, horrible menstrual pains, restless legs syndrome and digestive problems. And that’s it for now (that’s all I can remember, anyway).

Sometimes — most of the time, to be honest — you get all of the symptoms together. And there’s no cure for it. None. You can use palliative care in order to live your life in the most “normal” and “functional” way.

So to the person who told me fibromyalgia doesn’t exist, the next time you judge a condition you know nothing about, try talking to the people who live with it daily. More research may be needed for fibromyalgia, but it does exist. I live with it the best way I can, and while I’ll have awesome days when I forget most of the symptoms, there are days in which getting out of bed is physically impossible.

I’m lucky enough to be able to live my life in the most functional way I can by walking with a cane every now and then and canceling plans when needed. But I know people whose lives have been completely impacted by fibromyalgia.

So please, before you say fibromyalgia doesn’t exist, think about having all of these symptoms for just one day.

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Lead photo by Thinkstock Images

Originally published: January 6, 2017
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