Forging Ahead: Insights from Overcoming My Most Challenging Fibromyalgia Flare
Anyone living with fibromyalgia (or any chronic illness for that matter) will likely have a visceral reaction when they hear the word flare. We spend our days trying to avoid triggering our bodies into one, or nurturing our bodies to exit one. At times it can feel like a vicious and never-ending cycle.
I spent most of 2020 and 2021 in a constant state of flares. Intense musculoskeletal pain, burning skin pain, fatigue, thick brain fog, gastrointestinal issues, inflammation, and even a bout of shingles. Of course with the chronic pain came exacerbated mental health struggles. I felt like I was on a ride I didn’t want to be on and couldn’t get off.
Nowadays my symptoms are more manageable, and my flares are less frequent, less intense and shorter. I still have my difficult days, and while some flares appear seemingly unprovoked, the majority are due to a known cause and effect. I know my triggers. I can pretty much guarantee that if I go to bed after 2 am, drink alcohol, forget to pace/manage energy or experience emotional distress, I’m going to flare.
Despite living with fibromyalgia for many years, there is one particular flare that stands out. The intensity and speed at which it developed have stayed with me as the worst flare I’ve ever experienced. It serves as a reminder of how challenging and disabling fibromyalgia can be.
In February 2020, my previous business partner and I landed in Bogotá, Colombia. We were based in Cartagena so it was a short 1.5-hour flight. Flights can be exhausting for me, and landing in a city with an altitude of 8,660 feet (2,640 meters) doesn’t help matters. As an aside, even pre-fibromyalgia I’ve always struggled with high altitude. While it would take some people a day or two to adjust, I’ve spent weeks in high-altitude cities and my body never got used to it. Given this backstory, it would have made sense to have taken it easy upon arrival. However, we had a packed 2 days of meetings so there would be no time to rest and acclimatize.
The morning after arriving, and with little sleep, we had an early video call. I was starting to feel the tell-tale signs of an impending flare, but at the time I was earlier in my journey with fibromyalgia and didn’t give it much attention. I pushed it aside to focus on work. I do not advocate that people do this, but I was likely in denial. As the day progressed, I began to feel worse and worse. At a mid-day meeting, I mustered all of my energy since I would be presenting. The meeting went well, but after we left I could barely stand up. I must have been running on adrenaline, and my body was completely spent.
After we went to a restaurant, I just sat slumped in the chair, unable to eat. I’ve since recognized a complete loss of appetite as a sign of a flare. When your nervous system is in a sympathetic state (fight/flight), doing anything that expends additional energy, like digestion, is put on the back burner.
My business partner helped me back to our Airbnb and into bed. Then she left to do our final meetings of the day. At this point, I can only describe it as my body went completely haywire. The full-body pain I had been feeling as the day progressed further intensified. One of my main flare symptoms is a burning skin feeling due to central sensitization (nerve hypersensitivity). For those who are unfamiliar, I would describe it as similar to the burning sensation from getting a tattoo only throughout your body. This time the burning feeling felt like it was traveling deeper and deeper, through my muscles, tendons, and then to my bones. The visual I had at the time was like a laser beam penetrating every layer of my body. My bones felt like they were on fire. The pain was paralyzing, starting from my hip bones and extending down to my feet. I was trapped in bed, unable to move and unable to sleep.
I’ve never admitted this, but I prayed out loud of my own volition for the first time in my life. It may have more resembled begging; it had been a while since my Catholic school days. I promised that if God could just reduce the pain, I would try my best to be a better person. At this point, I was convinced that the pain was never going to leave. It felt as though I might be trapped, unable to move forever. I didn’t understand how my body could all of a sudden self-destruct. The pain and symptoms felt like the result of a severe physical injury, such as one might expect from a car accident, or the accumulation of a serious disease — neither of which were the case.
I was stuck in a sort of no-man’s land for hours until my business partner returned to our Airbnb. She helped me walk to a window for fresh air and tried to find some pain relief (though there was nothing that was going to work for this pain level). I spent the night feeling distressed and unable to get comfortable in bed. Unfortunately, we had our flight the next day but fortunately, I had someone to help me dress and carry my luggage. I frequently travel solo, and for a while, after this situation, I worried that something similar would happen again and I would be unable to manage on my own.
I was out of commission for almost a week after arriving back in Cartagena. I was unable to eat and walking up even a small flight of stairs made me dizzy. I developed a chest infection and finally, we went to the hospital where they gave me an IV for dehydration. The infection and subsequent coughing lasted for about a month.
To this day, I’m not sure what exactly precipitated the flare. I imagine it was a combination of stress, travel, lack of sleep, and perhaps the flu that impacted my immune system. It’s possible it was triggered by Covid, though it was before there were many cases in Colombia and none that I was close to became sick.
We all know that despite our best efforts, there are many things in life that we have no control over. Nobody knows this sentiment better than those of us with chronic illness. When I think about that situation, the worst part wasn’t the loss of control or the sense of disempowerment, although I did experience those feelings. I’ve since realized that what I felt was a deep betrayal. And like any betrayal, it’s a difficult and lengthy process to regain trust. Over and over again during and since I’ve thought-
How could my body sabotage me like that?? What if it does that to me again??
Partnering with our bodies is key to healing and navigating unpleasant experiences. But sometimes we gloss over the first step that’s required, which is forgiveness. Forgiving our bodies for trying to protect us, even though, in reality, they sometimes cause us suffering in the process. It took me years to understand that I was holding onto a lot of resentment, anger, and shame towards myself, which was probably contributing to more flares, and that vicious cycle again.
Nowadays I don’t take flares as personally. Sure, they are difficult, and inconvenient and certainly take an emotional and physical toll. However, I use them as an opportunity to give my body the love and attention that it deserves. We often have preconceived notions about what our bodies should be capable of, influenced by an ableist society that promotes ideas like ‘no pain, no gain.’ However, those of us living with chronic illness and disability understand that our bodies don’t operate that way. And by the way, this can become true for anyone at any time.
I now recognize the early warning signs that indicate when something is off. Rather than be disappointed, I’ve (mostly) learned to approach these moments with curiosity and compassion, asking what I need to do differently. That has included prioritizing rest before and after travel, organizing and planning to prevent and manage flares, and communicating when I need help — something I’ve always struggled with, fearing being a burden or perceived as weak (my own internalized ableism I had to unpack). Now when I visit high-altitude places, I always make sure to rest for a few days with no planned activities.
As for my promise to God, there’s always room for improvement, but chronic illness has deepened my appreciation and sensitivity to the human experience. Looking back at photos from when I was struggling with a mental health episode or a severe flare, many wouldn’t have known the pain I was in. All the layers and dimensions of the human experience can’t be captured in a few curated pictures on social media. Many people are suffering in one way or another and we have a collective responsibility to not inflict further harm, but ideally send kindness.
Reflecting on the past, I’ve come to understand that my perception of the flare as the worst was partly because it caught me off guard. However, it also served as preparation. The most challenging moments often arise unexpectedly; yet, they equip us to face future obstacles, as I’ve experienced with my ongoing fibromyalgia journey. Just like with everything in life, there’s always a lesson to be learned from situations that don’t go as planned.
And, as the saying goes, we’ve survived 100% of our worst days — perhaps, emerging a little more humbled and resilient in the process.
