Many people don’t believe in fibromyalgia — they say it’s a “head thing”. Those who live with this know how painful it is to deal with not only pain, but also disbelief. Sometimes people ask what it’s like to live like this, but it’s almost impossible to explain to those who have never felt it.
Fibromyalgia is one of the most difficult conditions to deal with, because the pain is invisible to those on the outside. We asked our online community: “How would you describe how you feel about fibromyalgia?” ”
For many, this disease is a daily challenge, but also a reminder to cherish each day. If you wake up and are able to move, enjoy. If you wake up and can’t do it, respect your body: rest, read, watch a movie. Might not be what you want, but it’s what needs to be done. Tomorrow may be different — and having tomorrow is already enough. I know it’s hard to hold that thought when you feel constant pain, but even on the worst of days, you can still find something good.
It is almost impossible to put into words the extent of this suffering – it is a real hell. Feels like a previous life has disappeared. Nevertheless, we have gathered below some ways in which people try to describe this pain:
What the community shares:
Imagine the worst flu you’ve ever had, multiplied by 10. Now imagine getting beat up or run over Then think of the most exhausting moment of your life and multiply by 10. Maybe this way you can understand what a good day with fibromyalgia feels like. A bad day defies any explanation.
It’s like running 10 kilometers, catching a strong flu, and mowing all the grass in the yard with a hand scissors. And yet, everyone expects you to do it all over again the next day — after all, you “don’t look sick.”
Is a pain that moves through the body. Pick a spot, and you hold your breath until it passes — but soon it settles somewhere else. You try to pretend it doesn’t hurt, try not to scream or cry. You’re always tired, but you can’t really sleep — you sleep listening to everything, with your heart racing, exhausted, but awake. Sometimes fingers go numb, the cold becomes unbearable. Muscles contract and twist — you try to relax so as not to worsen the headache that follows. Mind closes, concentration fails, words add up. That’s it. Just an idea of what it is.
It’s feeling like the Tin Man: needing to be lubricated in every joint. It’s like someone’s holding a torch lit in every muscle, with their head stuck in a bolt. A miserable existence.
Is feeling trapped in your own body. You never know what torture the day will bring.
It’s like being hit by a baseball bat, having torn and pulled muscles, carrying a heavy board on your shoulders all day, having flu, and sweating to exhaustion.
It’s like having a small being inside your body, running with an ice picker, stabbing joints and muscles all the time, non-stop.
It’s like a truck has flown over, like the hips need to be replaced, like the lower half of the body stopped working. It’s the worst hangover multiplied by the millions, mixed with a devastating flu. What about the memory? Some. Out of it ? All right!
It’s like something invisible squeezes body parts, as if fingers were sinking into the skin to grab the muscles firmly.uma It’s to have a claw pressing your head, a backpack weighing 9 kg on your shoulders, hips, knees, ankles, feet and hands. Also, a constant tingling, like when one foot falls asleep—but spread over the whole body. Eyes hurt from tiredness, skin gets hypersensitive, nose smells all the smells. And the lack of restorative sleep leaves everything hazy.
It’s like having a hangover and flu, after a heavy workout, like having fought several rounds with a boxer — and still living on another planet, because no one understands. It’s a hell of a bitch. It hurts every single day. Pain changes places all the time. When it feels like nothing can hurt, even your skin hurts. It’s like a truck going over you over and over It takes hours to shower, get ready — and then you need to rest. Sleeping is almost impossible: there is no position that does not hurt. It’s a pain that spreads from head to toe, like hot liquid being poured inside the body. The hardest thing is trying to keep your mind positive. Every day can bring a surprise: bowel crisis, migraine, infection, a deep sadness. New symptoms pop up all the time. Sometimes the itch is so bad that the skin rips, bleeds, and marks. The burn comes from within. It’s a burning pain, like my whole body is on fire. Toes and heels like walking on glass tops. Take the worst fatigue in your life and multiply it by 100. Flu time 10 Touch the skin – it burns. No medicine can make a way. Exhaustion is so deep that it prevents me from working. It’s losing almost everything you’ve gained, waiting for recognition that takes time to come. It’s living in intense pain and still looking healthy, which makes others judge you as lazy. It’s like someone has stolen life. No day is the same. Each day is a new pain, a new crisis, many times bed. It’s a daily fight against your body in order to exist. No one should have to live like this. It’s a pain so strong that many wouldn’t stand — but there’s no choice. And often there is no support from those who should understand most. It’s like someone pulls all the cords that connect muscles and tendons, stretching them until you can’t stand it anymore. And that can happen at any time. Imagine a nylon thread. Twist it against the fiber Do you see the little freckles? Throw crushed glass and sand in. Now cheer back on Do you feel the roughness that prevents nylon from returning to normal? So is every muscle, tendon and ligament of the fingers, hands, wrists, ankles and feet. Put on your shoes. Put on gloves. Is it uncomfortable? Now try walking, driving, standing, shopping. And there is no relief. Some days this also hits the back. Feel nauseous migraine You want to sleep, but sleep is not coming. Mind fails — words add. People think she’s lazy or dumb. Eat the fear, the anxiety. Does it sound too much? Well this is a good day. Tomorrow could be worse – and you never know. In a crisis, it’s like acid burning from the inside. On “good” days, you try to ignore the pain, but it is always there, limiting everything that could be. It’s a terrible nerve pain, with unexpected kicks in the chest or abdomen that suck the air out. And along comes the fear – the fear of forgetting everything, of not being able to think. It’s like being tied to two horses running in opposite directions. Arms pull to one side, legs to the other. Joints seem to be about to loose. Having a crisis is unbearable. Some days the pain goes on— softer, but it doesn’t go away.
It’s like someone is moving inside the brain, pressing random buttons: suddenly dizziness, forgetfulness, speech sluggish, head feels heavy, everything around seems far away, confused, as if you lose control of yourself for a few seconds.And you ? How would you describe how you feel about fibromyalgia?
