What Does Fibromyalgia Feel Like?

18 Physical, Mental and Emotional Things Fibro Feels Like

What does fibromyalgia feel like? What a question to try and answer. Fibromyalgia is a condition that is all about feelings; the feeling of pain, of exhaustion, of depression and despair. It’s a condition which impacts our ability, our confidence, our families and our friends — and to make it even harder, it affects all of us in completely different ways.

I have suffered from fibromyalgia for seven years and I blog about it on a weekly basis, yet I still have days where I am surprised by a feeling or experience a new pain. I’m fairly active on social media and I know I’m not the only one to feel this — I often spend my time interacting with other spoonies who struggle with the unpredictability of the condition.

In fact, we often marvel at fibro’s ability to shock us time and time again; just when we think we have it all figured out, we feel something new.

How do we describe such a varied, complex condition to people who don’t understand it? And even more importantly, how do we describe it to the undiagnosed — or recently diagnosed — so they can educate themselves and seek effective medical support?

What Does Fibromyalgia Feel Like?

I’m a week into a fibromyalgia flare-up at the moment, so I’ve been keeping notes on how it actually feels. Here are 18 things I’ve felt this week — physical, mental and emotional.

1. My muscles feel like I went to Body Pump last night, and then squeezed in a spin class before work this morning.

2. My knee joints feel so painful I think they’re about to come apart, like a raggedy old doll who’s been pulled in too many directions too many times.

3.  It feels like my muscles are bubbling away under my skin, tiny little spasms that last for hours.

4. My fingers hurt with every touch of the keyboard, like I broke them months ago and the bones haven’t recovered properly.

5. Walking feels like I’m wading through mud up to my thighs and all I want to do is lie down in it.

6. I am so tired that my eyes are stinging. Also, I feel like I’ve been awake for 72 hours straight, when, in actual fact, I’ve been asleep for most of that time.

7. I feel like I’m learning to speak a new language — my head feels completely empty as it searches for words, and I when I finally find the words I can’t put them in order.

8. I feel sad and disappointed. Even though I know and understand the pain cycle, it’s like I somehow thought this time would be different.

9. My head feels so heavy and my neck feels as weak as a thin twig, like it can’t possibly hold the weight of my concrete skull.

10. I look down at my shoe and my lace has come undone. I feel like everything is falling apart, like this is the final straw. The thought of having to bend and sustain that position or lift my leg to tie the lace is too much. I leave it undone.

11. The tips of my fingers are buzzing, and every swipe of my smartphone stings. I use my knuckles on the touch screen as I clench my fist, but the prickling continues inside my hands.

12. The skin on my back stings with pain at the same time as feeling deeply bruised. It’s like a metal bar fell on me and then someone cut into my skin.

13. Everything feels so tight, like if I just lie down and stretch everything will feel better. But it doesn’t; it bounces back just like a slinky.

14. My mind is full of energy; I want to go for a walk and cook dinner and do the washing, but my body is so sore and I am so tired that I can’t even face getting up for a hot water bottle. I am so frustrated.

15. There is a knot in my stomach, I feel distracted and ever so slightly sick. I am anxious, but I couldn’t tell you why.

16. I’m so itchy. Everywhere. Scratching provides some light relief but the sting after I’ve scratched lasts far longer than it should.

17. I feel so angry. I am so exhausted, so sore, so frustrated and nobody seems to understand this pain. Why am I no further along with this damn condition than I was seven years ago?

18. I feel a new pain. It’s on the top of my foot. It feels like I dropped something on it, though I know I didn’t. I ease my foot into my shoe can do nothing but grin and bear it. It feels like that’s all I can ever do.

What does fibromyalgia feel like to you? And how do you explain what fibromyalgia feels like to others?