What It’s Like Living With Fibromyalgia

For me, fibromyalgia affects everything—my energy levels, my pain tolerance, and even my ability to focus. It’s an unpredictable mix or pain, fatigue, and cognitive hiccups that impacts how I interact with the world. If you’re curious about what it’s like living with fibromyalgia or are navigating it yourself, here’s a glimpse into my experience.

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The Reality of Chronic Pain

Pain is the most consistent part of living with fibromyalgia, but what makes it especially challenging is how unpredictable it can be. Sometimes, it’s a dull, all-over ache, a heaviness that settles into my muscles and bones. Other times, it’s sharper, and it feels like it comes out of nowhere.

As much as I love my Passion Planners, fibro pain doesn’t follow a plan or pattern. It can flare up in one area one day, then move somewhere completely different the next. I don’t always know what sets off a flare—maybe it’s stress, the weather, overexertion, or just plain bad luck. The pain becomes a full-time, invisible job operating in the background of each and every day.

Beyond the physical impact, living with fibromyalgia pain can impact mental and emotional health, too. Chronic pain can be isolating. It’s hard to explain how much energy it takes to simply exist in a body that hurts all the time, and it’s even harder for a healthy person to “get it.”

Fatigue and “Fibro Fog”

While the pain is the symptom most synonymous with living with fibromyalgia, the fatigue and brain fog can be just as disruptive. Fatigue, for me, is like hitting a wall of exhaustion, and sleep just doesn’t put a dent in it. Even if I do manage what should have been a restful night’s sleep, I’m more likely than not to wake up the next day feeling drained and unprepared for what’s to come.

Then there’s “fibro fog,” the cognitive struggles that come with the condition. While it can be challenging to distinguish this symptom from similar ones, like the aphasia that comes with chronic migraine or the sheer forgetfulness of ADHD, it tends to make my brain work on a delay. I’ll forget words mid-conversation, lose track of what I’m doing, or find it impossible to focus on even simple tasks.

How to Manage Living with Fibromyalgia

The experience of living with fibromyalgia is a deeply personal one. Over time, I’ve discovered a few strategies that help me feel a little more in control—and they might help you, too! These are far from foolproof, but they’re tools I rely on regularly as a core component of spoonie life.

Medication

For me, prescription and OTC medications can help take the edge off specific symptoms, like pain or sleep issues, but they’re not a standalone solution. In particular, I take a COX-2 inhibiotor, nerve pain medication, and supplements daily and always have Advil Dual Action on-hand for pain flares. I can’t say that the latter is as helpful as I’d like, but it does make a bit of difference!

Rest

Rest is non-negotiable when living with fibromyalgia. Pushing through exhaustion or ignoring my body only makes things worse later. I’ve learnt the hard way to schedule downtime as part of my day, not just as an afterthought. It’s a work in progress, for sure, but I’m slowly getting better at stopping and taking a break before I crash.

Topical Treatments

Topical treatments are arguably one of the most crucial tools I’ve found while living with fibromyalgia. Some of my favorites include Topricin fibro cream, Absorbine Jr., Tiger Balm, magnesium spray, and a simple Equate muscle rub.

Movement

I’m going to be entirely honest—the past several months have been rough, and any sort of exercise has been more than I can handle. But, when my symptoms were a bit less severe, joyful movement proved to be helpful. Routines like yoga, strength training, resistance workouts, and simple stretching were ways to keep moving—and be able to have a response when a specialist argues that I just need to exercise more!

Everyday Adjustments

Relatively simple steps, like meal prepping on good days, breaking tasks into smaller chunks, sitting in the shower, or using tools like reminders and planners help me stay a little more organized, even when my brain and body aren’t cooperating. A lot of these steps are ingrained into my daily routines now, so I hardly realize I’m doing them at times.

Good Days vs. Bad Days

One of the hardest parts of living with fibromyalgia is how unpredictable it can be. There’s no way to predict know how I’ll feel tomorrow, so I’m forced to learn how to work with the rhythms of both good days and bad.

On good days, the pain, fatigue, and other symptoms are still there, but they feel more manageable. I have a little more energy and focus, which allows me to get through the day with less effort. These are the days when I can tackle bigger projects, spend time with loved ones, or enjoy my favorite activities.

The insidious part of these days, though, is trying not to overdo it, a mistake I’ve made plenty of times. When you push yourself too hard on a good day, you’re all the more likely to crash into a flare the next. I’m still learning the intricacies of pacing myself, especially when my ambitious wants to do so much more than I’m reasonably capable of.

Bad days, though, are a different story altogether. These are the days when pain, fatigue, and the overall toll of living with fibromyalgia are overwhelming, and even the simplest daily tasks feel impossible. On bad days, I focus on the essentials: eating, resting, and giving myself permission to let go of everything else (I’m still working on that last one, in particular).

Building a Life That Works

Over the years, fibro has forced me to reevaluate what “an ideal life” looks like. There’s very little I do that doesn’t require careful planning, and a whole lot of self-compassion. Things I used to take for granted—like planning a full day of activities or going off my sleep schedule without consequences—aren’t really possible now. Instead, living with fibromyalgia might mean making smaller plans with lots of flexibility or building routines that support my health as much as possible. My ideal looks different, but it helps me feel like I have some control over my day-to-day life.

If there’s one thing I want you to take away from this post, though, it’s that the experience of living with fibromyalgia isn’t one-size-fits-all. My experience doesn’t look like every other fibro patient’s, and what works for me might not work for another person. This condition is complex, and so are the ways we manage it.