16 'Code Words' You'll Only Understand If You Have Fibromyalgia

When you live with fibromyalgia, there are certain experiences only you and others with the condition can possibly understand. And when you’re in the midst of symptoms like fatigue or brain fog, sometimes being able to communicate in fewer words with your fellow fibro warriors – almost like a secret, abbreviated language – can be incredibly helpful, both practically and socially. After all, who can understand and empathize better than those who may sometimes feel so foggy they can’t remember the word “foggy?”

Many of those with fibromyalgia may use certain “code words” – part of their own special “language” – that help them communicate what they’re experiencing and better understand one another in the process. We asked our Mighty fibromyalgia community to share something they say that’s “code” for something else, which only their fellow fibro warriors would understand. Let us know in the comments below if there are any additional “code words” you and your friends with fibromyalgia use that you think should be added to the list!

Here’s what our community shared with us:

  1. “‘Not looking forward to the next few days‘ is something I will say if I had a day where I did more than I should because I’ll be paying for it dearly in the form of unbearable pain that won’t allow me to do much of anything.” – Taisha A.
  2. Bit on the foggy side today.” – Samantha-Rose D.
  3. I always tell my friends and loved ones ‘I hurt,’ but they don’t know that’s really my way of saying, ‘I’m feeling particularly emotionally exhausted by hurting all the time right now.'” – Zoie S.
  4. If I ask if the weather changed… pretty much means I woke up inflamed.” – Annette R.
  5. “‘I’m fine.’ = ‘Really not OK, but I’m exhausted from feeling like a burden to everyone around me.'” – Amanda C.
  6. “‘I’m all out of spoons.’ Non-fibro people are largely unaware of the meaning of this.” – Lea J.
  7. I’m flaring up bad‘… this is code for leave me alone and don’t touch me.” – Jenn H.
  8. “‘Words are hard.’ Translates to ‘brain fog has set in and I can’t think of the word(s) I want to say.” – Candess K.
  9. “‘I’m just tired‘ is code for many things. It means: I hurt, I’m exhausted, I’m sad, I’m having a brain fog.” – Emily V.S.
  10. “‘My hair hurts.’ –> ‘I’m having a flare and it’s a nasty one.'” – Tera A.
  11. When I say that ‘I’m not hungry‘ it means that I’ve been nauseous or haven’t been eating for days and the sight and smell of food would send me over the edge.” – Danielle D.
  12. It’s a ‘my clothes hurt‘ day…” – Becky M.T.
  13. “‘It’s Netflix time.’ In other words I’m in too much pain and too exhausted to do anything but cozy up with my laptop and pillows.” – Shayla F.W.
  14. My battery is dead.” – Crystal L.H.
  15. “‘The muggles don’t get it.’ I call non-spoonies muggles, because sometimes it seems like they are blissfully unaware of us and our struggles.” – Livi D.
  16. “‘Man, I feel old!’ I’m 22 years old and people laugh when I say it but when I’m with someone else who has fibro, they completely understand!” – Jennifer H.

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