More Unexplained Fun

Courtesy of me (and my bad artwork)

Late last fall, I was diagnosed with Fibromyalgia.

Getting to this diagnosis was no picnic, let me tell you. This all began a few years ago when my body started going haywire, and for a moment I thought it was just cosmic payback from the years of dosing myself with injections for my infertility. “Great,” I thought. “not only have I failed miserably, but I have completely hotwired and fried my endocrine system.”

What a fitting last betrayal for my body to give to me.

I felt like I had the flu 24 hours a day. The pain wasn’t localized to my joints, but rather all over. I started losing my hair. I felt like my mind was foggy at times. I just wasn’t me.

I initially started with a dermatologist to address the hair loss that was so disconcerting. After two rounds of steroid treatments (injections! again) with no results, I started to wonder if all of my symptoms were linked. Meanwhile, I visited a rheumatologist who initiated me down the path of zeroing in on what the heck was going on. Maybe Lupus? How about thyroid disease? Then came the mother lode of all blood work panels. Which showed a lot of weirdness. I had a marker for Lupus but not the one that mattered most. I had a couple of other unnerving results that seemed “fishy” to my doctor, but after further evaluation… it came back to the most dreaded word… “unexplained”.

Not again. That moniker will haunt me forever, I swear it will.

Fortunately, or unfortunately, the last stop diagnosis in this realm is Fibromyalgia. Which is, the disease of last resort when nothing else fits.

Fast forward to now… symptoms remain the same. No better, no worse. EXCEPT my hair seems to be growing again, which is nice (even though it looks like I took scissors to my head as a bad joke… I call it an EXTREME layered cut). I have kept off the 45 pounds I lost, but blew out my knee at the gym before the holidays, so now I am not exercising like I want to. Like I needed to. I just can’t get back in weight loss mode again.

It’s a gosh darn vicious cycle.

You know what sucks about fibro? It’s the gateway to hell. Because I am consumed with looking for the real reason I feel crappy… I really cannot wrap my arms around a diagnosis that may be totally off-base and can’t be tested directly. Because, in truth, I do think there is something behind the curtain I just haven’t figured out yet. Some yet-to-be-identified immune issue has and continues to lurk in my body. Lately, in my Google frenzy, I keep coming back to the topic of nutrition and malabsorption, and a possible link to Celiac disease.

You know what else blows? Doctors like to throw meds at you. I refuse to go on a maintenance medication, so I rely on a simple anti-inflammatory prescription which is dosed “as needed” to take the edge off. It does, and I move forward.

I have great days.

I have crappy days.

And so it goes. I rarely complain, because I am thankful that, so far, this is all it is. It certainly could be worse. There are people in my life right now fighting battles much bigger than my own, and it feels silly to even put ANY emphasis on my current condition.  But, considering I spent 99% of my 45 years on this earth as fairly healthy, it sure feels like a buzz kill.

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3 thoughts on “More Unexplained Fun

    • Oh yes, we did that and tested for all kinds of crazy stuff. My rheumatologist was exhaustive! Still sitting on the same diagnosis. And boy, does it suck…

  1. I am so sorry that you are in so much unexplained pain… my college roommate had severe fibromyalgia, and I saw first-hand how much she suffered from this condition. She is managing it now, for her what worked was a combination of regular swimming, and taking royal jelly. I know it can be quite different for different people. My MIL was also diagnosed with fibromyalgia although it's unclear to me exactly what this means for her since she's also dealing with a cluster of other health issues as well. I deeply hope that you can soon find the therapy/ies that work for you as I know it's no joke to be in constant pain. Big hugs.

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