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How do I describe my fibromyalgia symptoms to my family and friends?


Fibromyalgia is an “unseen” disease. This means that for someone to know that you have fibromyalgia, you have to tell them. It isn’t like having a broken arm or a rash; there are no external symptoms of fibromyalgia, and, unfortunately, the key symptoms of fibromyalgia – fatigue and muscle pain – are things people without fibromyalgia experience too. This is why it is so hard for the medical community to pin down fibromyalgia causes, and why despite being discovered in the early 1800s the first fibromyalgia treatment wasn’t released until 2007.

Fibromyalgia is constantly attacking the body. Ask your family to imagine how they feel the day after running five miles; or how they feel after wrenching their shoulder out of the socket; or how they feel after doing a few too many sit-ups; or how they feel when you know they put their keys somewhere but they just can’t remember where. These instances are minor compared to the physical pain of fibromyalgia – so magnify those experiences and add them together, all day every day. Things like “fibro fog” – one of the symptoms of fibromyalgia, a physical condition characterized by short-term memory loss, inability to concentrate and pay attention, mental confusion, language lapses – aren’t short-lived instances; fibro fog is all of the cognitive challenges that come with fibromyalgia added together and then poured on top of daily routines that are already a struggle because they’re being done by a body in constant, aching muscle, joint, and ligament pain.

Sleep for someone with fibromyalgia is a battle. If you do fall asleep, it’s short-lived; imagine the most uncomfortable bed in the world, sheets made of barbed wire, and limbs twitching uncontrollably. Good sleep is a bit of dream for someone with fibromyalgia. The lack of sleep only intensifies the affects of fibro fog during the day – especially because deep sleep, delta wave sleep, is how and when we store new memories we made during the previous day. Without that sleep, a brain is more prone to forgetfulness, a key element of fibro fog.

Fibromyalgia means that you never get to wake up knowing exactly how your body will feel that day. For healthy people, it’s a rarity to have a bad day – colds come and go, seasonal allergies come and go, but you can typically wake up expecting your joints to move, your thoughts to process like they always do, your hands and feet to move how you ask them to. For someone with fibromyalgia, it’s a rarity to wake up without any symptoms. Each day is entirely independent from the next; just because you feel one way one day does not guarantee the same set of symptoms or the same intensity of symptoms the very next day.

A common personification of fibromyalgia is that it’s a demon that plagues your body. Offer this image up to your family and friends: fibromyalgia is similar to having an invisible entity plucking at your muscles, playing with your joints, scrambling your thoughts. It is unpredictable, ultimately unmanageable, and constant. This demon tires out your muscles and tires out your mind without your permission, and you have to live in a body that it sabotaged.