Three days ago, I went to a new specialist, a rheumatologist. I was apprehensive, as this would be my seventh specialist, but I really wanted to figure out what was causing the fatigue and widespread pain. I’d already been diagnosed with Hashimoto’s, and that alone can cause fatigue and pain, even when your thyroid panel is in normal, or even optimal, ranges. But it didn’t fully explain why I can sleep for 15 hours and still wake up tired and not refreshed at all. Why I have daily pain that distracts me from my daily activities. Why my body just feels heavy like an anchor.
So, I nervously stepped into the rheumatologist’s office, and thankfully, she took me seriously, even when I made an awkward joke about being a hypochondriac. She did a full physical exam, reviewed my previous blood work, discussed family history, and then we had a really long conversation about how I feel, what my symptoms are, what I’m already doing to control those symptoms, so forth. She spent a lot of time with me. And based on all these items, and ruling out a few others like Lyme disease and arthritis, she said it’s fibromyalgia.
My honest initial reaction, I said to her, “Bummer, dude.”
She chuckled and agreed. Then it got really serious, really quickly. She said, “You’ll read that it’s not a real disease, but it is. It’s a real disease and it’s not in your head.”
And I burst into tears. I told her things I hadn’t meant to; it just came bubbling out of my mouth and I couldn’t stop it. I told her how much I missed my former self, the me that could get up at 6 a.m. and stay busy until 11 p.m. and do it all again the next day. I told her how lazy I’ve felt for the last four years, when my health problems started and how my emotional health has been impacted, and how I just feel guilty and lazy. She listened calmly and told me these feelings often come with a fibromyalgia diagnosis and she firmly told me I am not lazy at all. She said she could tell from my personality and our conversation that I still have a spring in my step and the internal resolve to take care of myself.
I left her office feeling OK. Not great, but OK. Having a name for it didn’t change my symptoms.
But now, a few days later, I feel absolute relief. I have a name for the overwhelming fatigue and I have a reason for my hips, back, shoulder to ache constantly and have those pins and needles feelings in my hands. It still doesn’t change anything but it is certainly not in my head, it’s not a reflection of who I am, it’s not a failure on my part, it’s not because of something I’m doing wrong or not doing right. I didn’t do this to myself. I’m relieved that although this is a lifelong illness, I can stop chasing specialists and new blood work and endless Google searches and I can stop trying to figure it all out – “Why does my head hurt? Am I dehydrated? Is it a stress headache? My does my back hurt? Did I overdo it when I went shopping and cleaned the house on the same day? Why do I sleep so much? Am I depressed? I don’t feel depressed, but I sleep half the day away, so maybe I need to talk to someone. Why is my hand all tingly again?” I’m OK. It’s not in my head. There’s a reason for all this. It can’t be cured, but it can be controlled, but most importantly, it’s not in my head and I can stop trying to find answers constantly.
And I’m grateful for that. Don’t get me wrong. I wouldn’t wish this on someone. But it’s a relief to have an official, medical reason for all these random symptoms. It’s not in my head. I’m moving forward. I can take care of myself, and that’s a huge relief. So I’m happy today. I get to move on.