What’s it Like to Have Fibromyalgia?

For those who are new to fibromyalgia rehab, the term fibromyalgia may seem confusing. For those of us who live with it every day, it is a term that makes us question our sanity, in some cases. Simply put, fibromyalgia, or “Fibro”, as most of us call it, is a condition that is characterized by never-ending pain that takes over your entire body. There’s no other way to explain it than this: pain, everywhere, all the time. In fact, someone once described it as follows:

Imagine being beaten and having huge bruises over your entire body, with a full body sunburn on top of that, and having someone taking a stick and repeatedly poking all your tender spots while you are trying to run a long marathon.

Fibromyalgia is a condition that takes over your entire life. It makes mundane things like taking a shower, going to the bathroom, or simply getting out of bed extremely difficult to perform. It sometimes feels like you are struck by depression, but you feel the physical pain as well as the mental struggle. Getting out of bed isn’t only difficult because you need to motivate yourself to get out of the covers, but pushing the covers up from you takes an immense amount of energy, and it feels like you have sticks poking at your most painful, tender points the entire time. Every movement hurts. Opening the door hurts, putting your shoes on hurts, and picking up your coffee hurts. The pain is always there, and if it leaves momentarily, you are filled with an existential dread that it is about to come back, unexpectedly, although knowingly. Everyday tasks become like running a marathon when you struggle with Fibro. What barely takes a second for some people feels like it takes an hour for us because the dread of the pain we feel is overwhelming. 

But pain isn’t the only thing that affects our lives. Well, in a way, it is. The pain we feel affects our jobs, because sometimes we just can’t leave the house. I have heard stories where some felt like they had ruptured the muscles in their groin and couldn’t leave the house because of it. Some of us lose our jobs because of it. After all, what employer wants employees who might not make it to work half of the time, and who wants an employee who is completely unpredictable? This is how our lives are dictated: unpredictably. You don’t know when the worst pain you’ve ever felt will hit, and you can only hope that you will be in a place where you don’t embarrass yourself.

Aside from pain, living with Fibro can make you feel like you are completely crazy. You put things in the wrong places and end up finding your wallet in the refrigerator and your eggs in the shelves at the entrance. Or, you think you are near the toilet when really you are doing your business in the shower. You then get tested for all kinds of things like dementia or Alzheimer’s and no one can figure it out. So, you come to the conclusion that you are just crazy. You get migraines, or recurring headaches, and you just don’t know what to do anymore. 

That’s what it’s like to live with fibromyalgia. 

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