Running 'Round in Circles

I find my Fibromyalgia changes so much that when asked which symptom has been the worst for me, I can’t give the same answer from one day to the next.

One week, the brain fog is worse, another the pain or fatigue is. And at the times those seem to be under control, other symptoms are cropping up. It’s hard to explain how the symptoms change or how the pain migrates to someone who doesn’t have it.

The years it can take before finally knowing what we have can be frustratingly too many as it is, as anyone who has this knows. Add in that it is a very misunderstood disease, even within the medical community, it’s no wonder we run around in circles looking for help.

Ten years into the diagnosis with this disease and still some people look at me like I’m crazy when I talk about it.

There are people who ask because they truly want to understand. And then there are the ones who just don’t believe Fibromyalgia is real…and are the quickest ones to offer unsolicited advice and make the most unhelpful comments in my experience.

I’ve heard comments from, “Isn’t Fibromyalgia what they call it when they can’t find anything wrong?” to “My … went on the internet and Fibromyalgia isn’t even a disease,” to “My Dr told me Fibromyalgia is a disease only bored housewives get.”

Sadly, the worst for me came from people who should know better…some of the doctors I have dealt with. The first doctor I went to blamed all of my symptoms on perimenopause/menopause, a catch-all diagnoses if ever there was one, very unenthusiastically sent me for some basic blood work – which of course came back normal – looked me in the eye and told me to go home, put my feet up and rejoice, that I was perfectly healthy. I left her office questioning myself. Wondering if I was overreacting. Doubting myself.

I happened to mention my appointment with this Doctor one day while talking to one of my husband’s Aunts. She was very quick to tell me to get a second opinion…that this was NOT menopause...and I took her advice. And I'm glad I did, but boy are there few doctors out there who listen and are willing to keep looking. And then to get ones who believe it exists?

I had one Dr (for a nanosecond) tell me he didn’t believe Fibromyalgia existed and wasn’t interested in learning about it. Umm…isn’t it your job to help patients? And more than one who believed in it but that taking anti-depressants was the only treatment…as if they’re a cure-all for everyone.

Now, I’m not saying anti-depressants are wrong for everyone with Fibromyalgia, I’m saying they are not the be all end all of treatment choices either. And for me, the ones I did try gave me more energy in the daytime but didn’t help whatsoever for the insomnia that they were prescribed for. Others helped me fall asleep quicker but I still couldn’t sleep any longer or better than without it. And all but one caused more weight gain, and I needed that like I needed another hole in the head.

One thing I have learned on this road is that when you know there is something wrong with how your body is working you have to keep looking for answers. It may take a few doctors before you find that one or two who get it and help. And you will likely lose people from your life along the way…but if they want to truly be a part of your life, they’ll not be making you choose between what is right for you and your health and what they believe your life should be as decided by them.

Until next time…keep kicking Fibro's butt one day at a time.