Fibromyalgia is a bitch. Being a male diagnosed with fibromyalgia is an even bigger bitch. I do not wish this illness upon my worst enemy, as it has consumed a significant part of the last six years.
For those of you who are not familiar with this asshole of an illness, fibromyalgia is characterized as widespread musculoskeletal pain accompanied by fatigue, cognitive deficits, and mood changes. Why does fibromyalgia suck?
- It takes forever to get diagnosed. The symptoms mimic dozens of other illnesses including, but not limited to: lupus, rheumatoid arthritis, multiple sclerosis (MS), thyroid disease, type 2 diabetes, Lyme’s disease, chronic fatigue syndrome, syphilis- tertiary stage, mononucleosis, and many more. Since fibromyalgia is a “rule out” diagnosis, I was literally tested for every one of the illnesses in the aforementioned list. ALL of them needed to be ruled out. It took five blood tests, an x-ray, an emergency room visit, countless doctor visits over the course of six months to be officially diagnosed.
- Doctors doubted me. Even though fibromyalgia has been researched and well-documented in the medical field for decades, there is still a school of thought that questions the very existence of fibromyalgia. To make matters worse, I was a 25-year-old male coming to them with my symptoms. Only about 15-20% of those diagnosed are male. Doctors kept sending me for the same tests. Two years into having fibromyalgia, I remember my family doctor questioning it. I broke down into tears in her office and pleaded, “If it’s not that, then what is it?” Just within the last year, another doctor, who works with the same practice where I was diagnosed, sent me for the same tests her colleague sent me for two years prior. Nothing changed, sweetheart.
- Anything can set it off. Bad night’s sleep? Flare up. Stressed out over work? Flare up. Poor diet? Flare up. Not moving around enough? Flare up. Moving too much? Flare up. Too hot outside? Flare up. Too cold outside? Flare up. It is a daily delicate balancing act to avoid symptom flare ups.
- Symptoms come and go. It is hard enough to predict when flare ups will occur, but also which symptoms will accompany them. One day you wake up and feel like your whole body is just weighed down. Lifting your head off the pillow feels like a daunting task, so you keep your ass in bed. This may go on a for a few days. The fatigue may improve, but your pain remains. You take steps to better manage the pain, and relief soon follows. Your symptoms stay at bay for several weeks until you wake up one day feeling foggy again. It is a vicious cycle. You could have fibromyalgia for years and suddenly a new symptom appears that you never had before.
- Fibromyalgia is mentally exhausting. It takes a toll on you having to be constantly mindful. Certain foods can help reduce inflammation, while others can worsen it. You need to have just the right amount of movement to not stiffen up, but also not too much. You must manage your stress levels to not trigger a flare up. It gets tiring to keep track of so much all at once.
- Knowing, adjusting, and accepting your new limitations. The hardest pill to swallow has been lowering my expectations of myself. I’m a motivated motherfucker. I get shit done. That is how I’ve always been. Learning that I now had a chronic condition where I had no choice but to pull back was a major adjustment. Here I was in my mid- to late twenties and supposed to be in my prime. However, I was no longer capable of that. Even tougher is making constant adjustments to these expectations. On a good day, I can go about my day with relative ease without any major hiccups. I can go to work, see my friends/girlfriend, and even exercise a little. The next day could be so bad that I can’t get out of bed and end up sleeping for twenty hours straight. I have to ask myself what I’m capable of on any given day and had to learn quickly to give myself a break when needed.
Fibromyalgia might be a bitch, but I’m a bigger one.
– The Caring Counselor