Under My Skin: What It Feels Like to Suffer a Fibromyalgia Flare-Up

Fibromyalgia is not an easy condition to understand. Its many symptoms and generally invisible nature make it difficult for anyone who doesn’t suffer from the disorder to really fully comprehend, even if you intellectually understand what’s going on inside the body. I am very blessed to have friends and family who are supportive and do their best to empathize with me on my bad days, but even the best of them can occasionally get frustrated or confused when they don’t understand why I’m not getting better.

With that in mind, I felt like it might be interesting to try and describe in words what it feels like to actually suffer from a fibro flare-up (an increase in the intensity of my symptoms due to stress on the body).

So here goes, I guess.

The first thing I feel is tension. The muscles in my back, my shoulders, my legs, and my hands all seem to wind tightly like clocksprings, pulling steadily tighter and tighter as my body prepares to battle itself. Then the burning sets in… the sensation is similar to the feeling you get when your muscles are overworked during exercise, only deeper, much closer to my bones. And it is everywhere. I can identify every individual muscle in my body, because I can feel the pain there.

Then the pain moves outward, towards my skin. Every nerve ending is alive in the worst way; even the sensation of air on my skin is jarring, like the sound of nails on a chalkboard being translated into touch. Someone accidentally brushes my arm, and I have to restrain myself from flinching as I follow the path of pain from my skin, all the way up through my spine and into the base of my skull. I want nothing more than to tear my clothes off, because the pressure of the fabric is making it impossible to concentrate.

I begin to move more slowly as all of my joints stiffen. Each twist and flex makes bones pop and crack, and I can feel the pressure building up between all of them. My joints are on fire, like they’re inflamed, but nothing visibly changes. I can barely stand because it feels like red-hot needles have been shoved into my hips, my lower back, my knees, and my ankles.

Internally, my stomach cramps. Any food I try to take in is immediately rejected; even water sits with me uneasily. The image of someone stomping on my internal organs with spiked cleats repeatedly comes to mind as I try to will my way into making the pain stop.

My head throbs and I begin to lose vision in my left eye; everything turns super-bright and colors begin running, like water flooding down my face. I know a migraine is coming and immediately have to find a dark, quiet sanctuary. Any amount of light or sound sends shockwaves of pain into my brain like nails being hammered directly through my skull.

Fatigue spreads through my limbs like the creep of poisonous gas, until I’m so tired that it’s as though I’m made of lead, not flesh. I’ve completely lost my ability to concentrate; thoughts slip through my grasp like water. I can’t focus enough to understand words when someone tries to speak to me. The only thing my brain seems capable of doing is making me feel depressed as my serotonin levels dip, and I struggle with the feeling of inadequacy as my young body betrays me.

There are no medications I can take to help stop this trainwreck. The most I can do is seek refuge in my bed, where I hide myself in the dark and under the warmth of my blankets until I manage to fall into a fitful sleep. Rest, fluids, and a stress-free environment are the only methods of treatment open to me at this point.

In general, my flare-ups tend to last about a day. Sometimes they’re more brief- a couple of hours in response to a particularly stressful event- and sometimes they last much longer. I think the longest flare-up I’ve ever suffered was about 36 hours.

Their severity varies, but there’s no way to predict how bad a flare is going to be. They’re not normally instantaneous; I can tell when one is coming on, and if I’m lucky I can get myself home before the worst of the symptoms hit. Though they sometimes happen for no obvious reason, usually a flare-up is triggered when I’ve pushed my body too hard… let myself become too stressed, tried to do too much physical work, got too little sleep, etc. The equilibrium is hard to maintain and takes as regimented a schedule as possible.

I experience nearly all of these symptoms to a less extreme extent every day, as do my fellow spoonies. So when we have to call off on a night out, or get a shift covered at work, or when it seems like we don’t do anything on our days off but veg out on the couch… this is why. It’s not that we’re lazy, or that we don’t enjoy doing things or hanging out with the people we care about. We’re just trying to manage our illness and keep our symptoms under as much control as possible.

And for those of you who read through this and are doing your best to understand how this invisible illness affects our lives, thank you. Sincerely. It is a monumental thing to have people in our lives who support us and who do their best to learn about what we’re going through.