the scariest flare i’ve ever had.

As I’ve written about often, I have Complex Regional Pain Syndrome (CRPS) as one of my primary diagnosis. It struck me, literally out of nowhere when I woke up from a nap – I had laid down not feeling great but in my usual state of health – in December of 2018. I woke up in absolute screaming pain, that the ER was unable to relieve in my left foot – even with morphine.

CRPS is called the Suicide Disease as one of the three most painful conditions known.

This lasted for weeks in a Stage One CRPS flare, with me unable to put any weight on it or have anything touch it (even a breeze was excruciating) before it finally moved to a Stage Two – still awful, but able to hold weight and more bearable relatively. Finally, it cycled through Stage Three, a cold and numb pain that is difficult to describe. Now it will have pain flares that are awful – burning, burning fire, intense pain, and difficulty walking – but it hasn’t in awhile – until today.

I would experience the same cycle through my right foot a few months later. After that, the systemic symptoms came: GI tract involvement, heart rate and blood pressure abnormalities, taste abnormalities and sensitivity to smells, severe facial pain and throbbing (trigeminal neuralgia- this is just my daily thing now), fatigue, and hell’s own gumbo of random neurological symptoms that come and go as they please.

It isn’t a pretty picture sometimes.

November is CRPS Awareness Month and I’ve been meaning to write a more. . . measured? . .  post – but, again, out of the clear blue sky, with no triggers and no injury, my left foot is absolutely on FIRE. 

(And, as I’ve been working on this post, I’ve been feeling more and more ill. . . flu-like body pain, fever, my blood sugar is running amok, just unwell. . . )

So it turns out perhaps it was meant to be a more forthcoming CRPS Awareness this year. . . 

Oh my word.

After I wrote the above, I was suddenly overcome a fever and weakness like I haven’t experienced before. I had to lie down and I was in bed too exhausted to move, sleeping fitfully for about 10 hours with my foot THROBBING. My heart rate was consistently about 135 even with my beta blockers and my blood sugar was crazy.

I don’t know what to say.

I’m up now and still feeling rough – but better than I was. This is a totally new kind of episode.

just being real.

CRPS is life-changing, so painful, and incredibly unpredictable.

I’ll be sharing more this month – but now I need to lay back down for a bit. . .

Be well, everybody. Take care of yourselves and each other. 

Grace and Blessings.

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