Author’s Note: The first Friday of every month, the Pioneer Valley Writer’s Workshop hosts a Zoom community writing session. A couple of prompts are given and then after a designated writing time, work can be shared if the writers desire feedback. The prompt that sparked this essay was “make a list of things and people that have annoyed you in your past. The list was longer than I expected and after breast cancer, this topic was at the top of my list.

Having undiagnosed fibromyalgia has to be one of the most annoying things that I have ever experienced. I started exhibiting symptoms about a decade ago, but they were all so vague the could easily be passed off as other things – my constant body aches and burning pain could be dismissed as arthritis and muscle spasms, with an occasional pinched nerve diagnoses thrown in for shits and giggles. I chalked up my digestive issues to not being able to eat the things I could eat as a child anymore. My inability to regulate my temperature? I’ve always been cold natured. Excessive fatigue? Who isn’t worn out these days. It was easy to just try and power through the pain, but when it began to interfere with my life, I knew I needed to get to the bottom of what was wrong with me. My doctor ordered a battery of blood tests and a neurological exam, which fortunately ruled out life threatening issues like multiple sclerosis or rheumatoid arthritis. With no definitive diagnosis, I was told in 2024 that I have fibromyalgia, or as I call it, a non-diagnosis diagnosis. I was put on a low dose antidepressant, which pissed me off – I wanted to scream “my brain is fine, it’s my body that’s shot to hell” but I was in enough pain to take the pills. One 20 milligram Cymbalta once a day. For a while it worked. I was able to wean myself off of the daily Aleve and 8 hour Tylenol I’d been taking for months and I felt better. Eventually the Cymbalta started blunting my emotions. Not cool. I had to go fifty rounds with my doctor, including having a completely unnecessary appointment with a psychiatrist- to come off the medication due to a past episode of depression. Thankfully she told me I didn’t need it and could just stop taking it since it was such a low dose.

As frustrating as getting a diagnosis was, it’s even more annoying living with what some people consider a fake illness. Pain is subjective – what might be excruciating to one person might be a mere annoyance to someone else and many people don’t take pain seriously because it’s not a symptom you can see. People write it off as overreacting or a sign of mental illness, but pain is real. I live with it most every day, more so in the winter when the weather is cold and damp. I can tell you the weather two or three days before it hits and sometimes I just need recovery time after a busy day. It’s not in my head. It’s also annoying that science hasn’t studied fibromyalgia to the same degree that other chronic disorders, like chronic fatigue syndrome. Even worse is that much of what science knows about pain comes from studying men, but women process pain in completely different ways. There shouldn’t be a one-size-fits-all approach to pain management, but that is sadly where medical science stands these days. I have heard that there’s a new medication called Tonmya that specifically targets the inflammation and nerve pain of fibromyalgia, but given my recent experieces, I’m not holding out much hope for more permanent relief.