According to her source, 66% of us may have been misdiagnosed. So two-thirds of us could be living with diseases that could possibly be treated and maybe even cured. That is a pretty staggering statistic.
I agree with what she is saying, for those newly diagnosed and those who were diagnosed without proper testing ruling out other conditions…but, maybe not for the rest of us.
As I’ve mentioned before, I feel like there comes a time in your life, post diagnosis that a certain amount of peace is gathered through the acceptance of having FM.
The time, energy and money spent on ruling out other conditions is considerable. You think to yourself, okay…I am going to do this and I can be relatively sure that it is FM. But it seems like it is never-ending. Along comes a new Lyme test, or a new hypothyroid range, or some study on adrenals or a book that says all those tests are outdated.
And while you are dragging yourself from doctor to doctor, you start to become preoccupied with it. You spend so much energy trying to educate yourself, so much time tracking your symptoms, so much money on co-pays. It drains you and for me, there is nothing worse for my FM than being drained.
Not to mention that little bit of hope you start to have and all the emotion that surges at the thought of a curable or treatable illness. When it comes back as FM, the disappointment wreaks its own havoc.
Every once in a while I will read something new that plants a “what-if” seed in my head. What if I really don’t have FM and it’s really some obscure neurological disorder, or chronic lyme disease, or hypothyroidism, or a response to mold and/or toxins. I don’t know if there will ever be a time when I can 100% be sure that FM is the thing that is causing my body so much distress. Until the day they stop labeling it a syndrome and start understanding it’s origin, I will always have doubts.
I am not saying that anyone should accept their diagnosis at their first general practioner’s suggestion of FM. I didn’t. I flatly refused to even hear what they were saying. It wasn’t until ten years later when I could no longer deny it, that I finally accepted it. So if you are recently diagnosed, by all means, you should make sure that no stone is unturned. But there comes a time when you might be better off to turn off the what-ifs.
I am doing relatively well these days. *knocks on wood* I have about five mild flare days a month, and one or two serious flare days which usually involve either high stress, physically overdoing it or my monthly cycle. The other days I still have my regular stiffness and pain, but for the most part, I feel kind of normal. My anxiety is under control. I am making my 10,000 step mark every day. I still have weird symptoms and am easily overwhelmed by stimuli, but I feel more in control than I have in so long.
I don’t want to doubt my FM diagnosis anymore. Deep down, I associate that doubt with a time of madness in my life that I just can’t handle again. I read so many blogs that talk about doctor appointments, new tests and new treatments and I’m over here like, “no thank you”. Life is so much better without all that noise. And it has never amounted to anything more than just noise for me.
Is this defeat? Absolutely, I feel defeated. I don’t have any faith left in the medical community.