I remember the first time I mentioned to my doctor that I believe I have Fibromyalgia. She rolled her eyes.
I stopped as I wrote that last part, about her rolling her eyes… and sighed.
She and I grew up together, kinda. She was new to the country and so was I. She was young. I was young-ER. Not than her… no, I have always been (and still am! lol) at least 10 years older. Possibly 20.
She was learning about “bedside manner”. She used to say snarky things to me… stuff like… “Gotta go get the BIG cuff to take your blood pressure!”
Oh. Ha. Ha. Yes, I know I’m fat. Thanks for pointing it out in a joking way instead of having a difficult conversation with your patient about obesity, though. Ugh.
Anyway.
In the end… as in, years later… I was seeing a Psychiatrist for my depression and anxiety… and she (the Psychiatrist) diagnosed my Fibro.
At that point, my doctor had to admit that yes, while I seem to have it, she doesn’t want to give me that label. She says I’m taking all the meds she would give me anyway… so… uh…
I don’t know what any of it means.
Except that… I’m in pain. A lot.
Not all the time, though.
Sometimes, I can almost skip for joy because I feel so good.
Next day, I might not make it out of bed… at least, not without a lot of … effort. Slow movements… and coffee.
My oldest daughter bought this book because she has a whole syndrome… including Fibro and Chronic Myfascial Pain. She suggested I read it. Then, she gave me her copy when she moved.
I read it like a novel. I couldn’t put it down.
What a freakin’ eye-opener!!
My copy of Fibromyalgia & Chronic Myofascial Pain by Devin Starlanyl and Mary Ellen Copeland is dog-eared, written in, highlighted, wrinkled from where I spilled coffee and as you can see in the featured photo, has colorful Post-It arrows sticking out from the pages.
The subtitle is: A Survival Manual… and it certainly IS that!
It has so much information.
SO, SO MUCH!
There are symptoms, of course. As a health-anxious person (mentioned in all these posts), it wasn’t easy looking at symptomatology. But… gotta say… it was amazing, once I got the courage to look.
Like, look at this diverse and odd set of symptoms:
Do you…
- Attract mosquitoes?
- Bump into things frequently?
- Have a changing or hoarse voice?
- Have pain at the crown of your head?
- Get dizzy when looking at patterns like stripes?
And on and on it goes…
I can check of EVERY SINGLE THING listed in the book. I always wondered why the top of my head was tender; even to the softest touch. Now, I know!
There are also triggers and coexisting conditions. Diagrams and resources. Healing ideas… medical, psychological and spiritual.
There’s my favorite chapter on Wellness Recovery and an Action Plan… and then so much there, too. From medication to meditation … from nutrition to exercise to support services. There’s even a section on Disability Benefits, should you need it.
It’s just a spectacular book that I have gone to again and again! I highly recommend it!
Originally written by me for this blog on May 29, 2018