You know what sucks the most about Fibro?

It’s a loaded question because I’m sure that together we could name 10,000 things that suck about this disease.

The one that annoys me the most doesn’t have a word to describe it, but you’ll know exactly what we’re talking about. It starts with a good day. Things are going along fine, pain is manageable, reasonably good sleep the night before, good self-care, no changes in diet or exercise and no new medicines. Yet, upon waking the next day you find yourself bone tired with increased pain, you’re cranky, foggy and just feel sick. You’d love to go back to sleep but you know that – now that you’re awake – you probably won’t be able to sleep.

Familiar, isn’t it?

One perfectly good day followed by a flare. It’s the mystery of this syndrome. Things change for no apparent reason, without a single hint that a bad day is on its way.

I wish it were more like what (I think) happens for many people who must live with diabetes is (although I freely admit I’m not diabetic and am exceedingly grateful for that). The way I understand it, if a diabetic is conscientious about food intake, gets some exercise and takes medicine as prescribed, the disease is – in very general terms – under control. (Please, please correct me if you are diabetic and have a different experience. I actually like to be wrong, because it’s an opportunity to expand my thinking.)

By comparison, fibro seems under control and then kicks your ass when you’re not looking.

Has anyone cracked that nut? If so, I’d love to hear your story.

 

 

‘Bradying Down:’ it’s an interesting experience

Many of us take trigger point injections to deal with the muscle spasms that can accompany fibro. Mine took an interesting turn today when I passed out, mid-injection.

The doc was working on an area behind my right ear with the goal of reducing neck tension and headaches (not all caused by fibro, by the way; as a writer, I spend many, many hours at the computer). In the seconds that passed between the start of the injection and when I regained consciousness, my left hand somehow managed to hit the doctor’s syringe, piercing the webbing between my left thumb and forefinger. (It was ‘through-and-through, from the palm side to the back side of the hand.)

Although only out for a few seconds, I was seeing double, unable to walk and unable to speak for at least 10 minutes. The feeling was surreal and reminiscent of a stroke experienced in 2010.

The medical term for what happened is ‘Bradying down’ (sounds like ‘braiding down’ when said aloud). It’s a fancy way to say one’s heart rate has dropped dramatically.

Trigger point injections have been part of my therapy regime for years but never with a reaction like this. (Please comment – would love to hear stories from everyone, but especially from people who’ve had this happen to them, too.)

It was several hours before the foggy-headedness wore off. As I rested, quite a few questions came to mind: is chiropractic a good alternative to injections? (Many chiros now use an instrument for adjusting; I wonder if that provides the same kind of relief minus the needle?) How does one work as a writer without curling over a computer all day? Are there alternatives – Somatic training, Pilates or alignment practices that will loosen chronic neck tension? (It’s probably an easy ‘yes’ to the last question.) I’ll do the research and report back here.

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Welcome to Fibrowell!

It’s hard to do life well when you hurt.

We deserve better information about fibromyalgia and we deserve the right to find it without spending hours and hours online.

Fibrowell is a place where you will find a well of fibro-related information that’s actually useful in real time. (To put it another way: tips, tricks, experiences and insight to try right now.) No cures, just stories and info about what works well for other fibro folks.

You’ll probably see the occasional rant, too – particularly about pain management and why attitudes and big business (pharma) both need to change.