Falling apart

I say it feels like my body has been lit on fire as I have horrible nerve pain with mine

i focus less on the amount of pain - everyone thinks they understand the pain at least (even if they dont), and most people who have heard of fibromyalgia think it's all about the muscle pain - and focus on some of the other symptoms. it makes me feel tired and out of it all the time. it means i have other weird sensitivities, like light, sound, touch and cold are more intense than normal. it means i have other related conditions, like ibs, ic, gerd, hypermobility, and pots. it means that i have a weird allergy to ibuprofen, muscle spasms that sometimes keep me awake, numbness in my hands and feet. it means i feel dizzy and disoriented a lot, like i'm going to pass out from overwhelm. it means i need a cane to get around safely. it means when i'm sick, my whole body is 20x more sensitive and even moving my head on my pillow feels like burning on my skin. really, my earliest and most basic symptoms were more like i had low level flu constantly, so when people complained about how the covid or flu vax made them feel, it was just like, wtf do you mean? this is just like normal for me. now it's a bit more complex, but that's a good one to start with. "imagine you have the flu, but instead of a cough, you also have a migraine, uti and anemia..."

I say it's like a pain train traveling through my body randomly letting off painful passengers all over that stay as long as they like before getting back on and moving somewhere else.

i feel drained, almost like i got beat up recently, exhausted, and incapable of things that healthy people even decades older than me can do with ease because it hurts so badly

If you look up the spoon theory sometimes that helps with explaining the level of energy you have. I used to sometimes explain how achey/tired they feel with a bad flu is how achey/tired I feel on a good day. Our normal is just different

I explain it as feeling like I have the flu even though I’m not sick and specifically the brain fog I explain it as feeling like my brain is buffering like a computer unable to open a file I know the memory is there I just can’t access it and for fatigue I explain I get tired easily because my batteries fully charged is one aaa battery and healthy people function on multiple 9v batteries. And that my battery doesn’t charge as quickly or hold a charge as long.

I explain the pain part of it like being sore after working out except add nerve pain, multiply it by a few times and then put it everywhere all the time. as for the fog and fatigue, I explain that as imagine you felt like how you do right before you go to bed, except all the time. hope this helps! good luck soldier <3

This isn’t a super complex answer, but for whatever reason before I was diagnosed we started calling flares “bad bones days” because I would tell him that not just my joints but my bones themselves hurt. Maybe it’s an oversimplification but I think that’s part of the joke. It helps me to try and stay lighthearted about things if I can. Good luck, I wish you few bad bones days 💕

I say it's like a bad flu but without respiratory symptoms

Not sure where I saw this but someone compared it to feeling like someone had a voodoo doll on them. Being poked and stabbed randomly. I have been experiencing this lately.