Fibro Diary, Fibro Life, Fibro Thoughts

Not A Clue What I’m Doing……

No idea how any of this works – I’m already lost just with trying to find a theme and colours I like! Also seem too dense to work out how to fill in the About Me bit, so I’ll do it here instead.

I had a “mystery illness” from my childhood years onwards, which grew worse and worse, and less manageable as time went on. By the time I was in my 30’s, I was so sick of letting my boss down with this vague “I don’t know what’s wrong with me, I’m just so TIRED, and miserable, and I can’t think, and everything hurts…, the doctors don’t know what’s wrong with me, either,” that I left full time work and became self-employed. I figured that being in charge of what days I worked would mean I could go back to bed and stay there when I had those days when getting up seemed like climbing Everest whilst wading through treacle, in a headwind.

I also, naively as it turns out, thought that once someone – a doctor, a specialist, me, ANYONE, had diagnosed what exactly was wrong with me, I could then be fixed. Be normal. Be well. Wake up feeling like I’d actually slept.

My DX finally came in 2011, following my body’s lousy reaction to breast cancer treatments some 4 years earlier. Every symptom I’d ever had intensified, magnified, and became very much UNmanageable. My oncologist, irritated by my constant whingeing about my muscles hurting, referred me to Rheumatology.

The rheumatologist knew within minutes what was wrong, and said so. I snorted with derision.

“You’ll be the first person in more than 30 years of asking who does, then.”

Whereupon he got me painfully up on to the couch, and proceeded to stick his fingers into bits of me that, previously, I’d had no idea could hurt quite so much.

After he’d scraped a screaming me off the ceiling, he told me I had “severe fibromyalgia”.

I looked at him in disbelief. All I then knew about fibromyalgia was that I’d once seen it listed as one of the ailments on the back of a box of Anadin, and that it basically meant “stiff muscles”.

“Stiff muscles??? Seriously?”

“Oh, noooooooooo,” he said. “You need to go and do some research, read up about it. But you’ve definitely got it. You jumped at nearly every tender point there is. Plus I already  knew from your description of brain fog, exhaustion, depression, and wading through wet concrete.”

So, diagnosis complete, I went home quite excited. I was going to be well again! Yay!

But, if you’re reading this because you, too, have had a dx of fibro, as those of us familiar with this vile little illness refer to it, then you’ll recognise the crashing disappointment you suffer when your doctor and your specialists, and anyone else you can find to ask for help, all tell you that there is no cure. NO CURE.

They tell you, at the start of your dx, that it “isn’t progressive.”

Bollocks, it isn’t!

They told me, at the start of my diagnosis, that it IS “treatable” – except that one of my biggest problems with fibro is that my system is utterly shite at detoxifying substances which every normal body finds easy to get rid of and or render harmless, so I react in perfectly ridiculous ways to an awful lot of prescription drugs. This includes every single recommended fibro management drug (you should have seen me in chemo!) so there’s no help for me there.

They also tell you that some people recover, and I’m sure some do. But go onto any fibro forum, and beyond the initial posts of the fibro newbies who gaily declare that they won’t let this thing beat them/grind them down/change their life, there are posts from people like me who have had it for decades, and who only get more sensitive to any treatment options.

I’m all for not wallowing in it, for researching and trying new ways of getting well, I truly am (I even recently got told off by a doctor for spending too much time reading medical papers and trying to get well!) so I hate to be the one who tells you this, but unless your fibro is a) mild, and b) caught early enough that you can tolerate and benefit from the recognised fibro drugs, you are pretty much stuck with this thing.

Sorry! You have NO idea how desperately I wish that wasn’t the truth. X


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