I think it’s time to tell the story about where I’ve been for so long. It’s hard to find a place to start. Even though it’s been almost two years, it’s all still very new for me and I’m still learning how to cope. This is a long post and more for the benefit of justifying my absence than anything else. I suppose I’ll start from the beginning.
Two years ago, I was having horrible back pain for the second time in my life due to an old injury and early in May of 2018 I started once again into the horrible treatment option of injections. At that time, I hadn’t been functioning well with the pain and decided to put my fitness career on hold until the injections process was over. I figured it would be about three months. Boy was I wrong.
Fast forward to October and I had been through six injections and radiofrequency ablations on each side plus a major surgery for an unrelated ailment…and I wasn’t better. Following those painful months during which I barely started to recover before another procedure was scheduled, I experienced a fatigue that I had never before felt, not even during pregnancy. I was nodding off driving and even falling asleep standing up. Twice I slept for two days straight.
In December, it was discovered that my thyroid wasn’t functioning properly, but was on the rebound and I wouldn’t need medication. Still, I was no better in terms of pain relief or energy levels and my memory and cognitive function were now being affected.
Now, when I say pain, I don’t just mean in my back. I have had pain all over my body, especially in my hands, since I was about six years old (at least that was the earliest I’ve seen it documented in my medical records). It hasn’t always been constant, but I have had the tendency to go through periods of years on occasion where the pain did not stop. There was never a diagnosis, even after a trip to a specialty clinic in Pittsburgh in first grade.
A CT scan in January revealed a 1 cm mass in the left frontal cortex of my brain. And for a short time in February there was an “unspecified lesion” scare following a full-body bone scan on my sternum that turned out to be nothing.
Finally, after a particularly dark and low point in the “unknown zone” (as a friend of mine calls it), where anything you can imagine a person in that situation could go through (and maybe some you don’t want to imagine) happened, I decided enough was enough. At that time I had seen or was scheduled to see 17 doctors and specialists – everywhere from psychiatrists to neurologists to rheumatologists and more – with no more answers than I’d come in with. The possible diagnoses ranged from cancer to early-onset dementia to multiple sclerosis to “it’s all in your head,” and it was worse for my mental health than I could handle.
After a particularly difficult discussion with my husband one warm summer night, we both agreed that I should only keep the appointments that were truly necessary. So, I kept the two that mattered.
In early June I learned, thankfully, that the tumor in my brain was both benign and non-vascular, an unspecified lesion that was probably nothing. And in July, the rheumatologist told me I have fibromyalgia and have probably had it my entire life.
Now, fibromyalgia is one of those diagnoses that many doctors believe is over-diagnosed, but I have been through almost 30 years of tests – aggressively in the past two years – to eliminate all other possibilities, including an EMG, which was the most painful test I’ve ever experienced. Given all the test results and my patient history spanning three decades and about that many doctors, the rheumatologist felt that there was no doubt. So now I am one of the lucky 3 – 6% of the world’s population that has it.
And you would think having an answer would be relief enough, and believe me, following that second MRI where my tumor was down-graded, it was, but after such a long ordeal….after all the procedures, surgery, the wonky thyroid, and a flare-up of fibromyalgia, my self-confidence, hell, my entire self-identity was shattered.
Along the way I experienced a lot of trauma at the hands of doctors who simply did not believe me or flat-out refused to explore zebras over horses. I truly believe that’s one reason it has taken so long to get answers. The other is because fibromyalgia is such a difficult disease to diagnose and no one is sure what it is exactly or what causes it, only that it causes great suffering and years to diagnose. At least now I know what’s wrong.
There’s no happy ending to the story yet. I am recovering at a snail’s pace and am determined to function like my old self again someday. (Totally worth celebrating, and I do.) Right now I’m still learning to live with the unpredictability of fibro symptoms, still looking for a course of treatment, and working with some really amazing healthcare professionals to manage my pain. I can’t guarantee that my posts will be regular in the near future or even what topics will dominate my blog, but I’ll tell you this: I AM back, and I’m ready to take on the world.
If you are struggling with an unknown illness, don’t give up. It may take years and it may take many doctors, but keep going. Eventually, you’ll find the right doctors who will advocate for you and help you find what you need. Until then, advocate as stubbornly as you can for yourself. You’re not crazy, you’re not making it up. You know you and you know when something’s wrong. Don’t ever let someone try to convince you that you don’t.