How do I describe fibromyalgia for people who have never felt it

Have you ever wanted to feel what it is to have fibromyalgia? Not? Not me either. But I got to know the details very well (certainly better than I ever wanted) and should be able to familiarize you with enough of my experiences that you will have a better understanding of someone in your life who may have a chronic illness, pain or other health problems. So breathe deeply and get ready to try something new. A journey through my eyes, if you will.

Remember the last very bad burn you had – the kind that makes you notice every inch of your skin? It was itchy, it felt tight and warm. Let yourself feel now – imagine that sensitivity is tight and the hesitant perception of every touch spread all over your skin. Now you can feel the seams on your clothes and even be aware of where your fingers touch and the folds of your skin on your elbows and knees. The collar of his shirt is tight and the waist of his pants is tight. uncomfortable, claustrophobic.

But touch is not the only sense that is increased. The sounds are starting to get louder than they seem absolutely necessary, and often unpleasant. When you drive, the lights may look very bright and sometimes shine unexpectedly. You have to drive much more carefully at night – the headlights suddenly seem to be off to you sometimes. The smells are too strong, and scents that once were pleasant, or foods that you find tasty or simply indifferent, are now vile and sometimes completely unexpected, are nauseating.

Have you ever had the flu? That nasty seasonal kind that makes you so sore that even after taking four Motrin, you can still feel your whole skeleton? If you have a useful reference. If not, be happy and keep getting your flu shot! Imagine waking up with that painful feeling one day, only it is frighteningly worse than usual. You moan to yourself, think, “Well, that flu vaccine did not work,” and sighed, hoping she’d disappear after a week, like the last time. Only after two weeks, three, you start to worry. And then, it gets worse. It starts leaving your limbs heavy, tired. Similar to the feeling of walking in the sand, you may forget a few days that you do not have the energy you used and overdo things, only to pay energy debt for two or three days in bed. These days, and a few random days, for no foreseeable reason, other than fate’s cruel sense of humor, you can only wake up with the energy to get out of bed, get dressed, and eat.

The partner of chronic fatigue and pain is something called “brain fog,” which seems silly. It is not. It can make you feel foolish and embarrassed, and try to hide it and laugh like nothing. But your keys can end up in the freezer, milk can get into the closet, and you’ll find yourself in some random room in your house staring at the wall and wondering, “What would I do now?” Four times a day. Shopping is a joke, even if it’s much more … whimsical now. You touch all the fabrics of the clothes to see if they are soft enough and tell your wife, “Oooh, feel this towel!”. Do not worry, they’ll get used to it. My husband has to remind me of what I was looking for whenever I am distracted by those pretty stickers or towels … A target is a dangerous place.

But, believe it or not, all of this – down to the last detail – pales in comparison to the pain. He will become your best friend, your new constant companion. Some days it is tolerable, and only makes everything a little brighter and the corners of the eyes a little tighter. This makes your temper quick, but you have good control over things (just do not ask your husband what he thinks). Other days, well … those days when we do not like to think too much. Some of them will be spent looking for distractions such as books and movies. You probably know the cinemas with comfortable seats, because the ones that are uncomfortable are the ones you can not go any more. On other days, the bad ones, you can pretend it does not exist.

I know I painted a very dark picture here, and one that you may or may not believe is exaggerated. Whether you do it or not probably has a lot to do with whether you have had experience with chronic pain or someone who has. But I’ll tell you something else you can believe or not, and that’s what I thank for my fibro. He taught me more about me and about life than anything I have ever experienced.

I never knew how soft Yorkie’s hair was before, or how lovely the smell of rain would be after the fog. I could not also enjoy the rain music on the roof when I closed my eyes after a long day. There is a balance to be found in pain, for me, when I seek.


46 thoughts on “How do I describe fibromyalgia for people who have never felt it

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