The Ever Changing Rules of CRPS

By Cynthia Toussaint, PNN Columnist

Two weeks ago, writhing at a level 10 pain, struggling to position my heating pad just right for a moment of relief, I told God that if it was time to take me, that was okay.

I thought I knew the rules of Complex Regional Pain Syndrome. After nearly four decades of trying to sidestep the burning torture, making every attempt to not poke the bear, I was confident I’d cracked the code enough to ward off any long-term flare. The kind that makes you think about dying.

But a shot of emotionally heightened experience, a jigger of COVID vaccine, and a splash of post-chemo recovery combined to turn the rules on their head. I think.

No question, I needed to see my mom. Due to my bout with aggressive breast cancer, a once-in-a-century pandemic, toxic family members and my mom’s advanced Alzheimer’s, I hadn’t seen her in a year and a half. When COVID loosened and I discovered she’d been placed in a nursing facility, a window of opportunity opened for a possible visit without seeing family members that harm and hurt.

The heavens opened and I got to spend a glorious day with an angel disguised as my mom.

But before that, wheeling up to the facility, my profound dread leapt to the nth degree, fearful that I might be facing a firing squad made up of familial cruelty. That, along with the emotional elation of time together with Mom – loving each other through her scattered cognition – sent waves of arousal through my nervous system, sparking over-the-moon pain as my partner, John, and I made our six-hour return trek to LA.

Over the next days, then weeks, as my pain maintained its grip, I knew in my gut this flare was something altogether new and terrible. But why? As I learned long COVID was inciting cytokine storms of pain and fatigue, and that many of my vaccinated sisters in pain were experiencing epic flares, I postulated that the vaccine (which had already re-erupted chemo side-effects) was probably the secret sauce for my exquisite agony. 

Without a doubt, this is the worst CRPS flare I’ve had in 35 years – and that one from the Reagan 80’s left me using a wheelchair to this day. Imagine my fear of what I might lose this go around. I’ll tell you, it’s soul-shaking.

In the past when I’ve experienced bad flares, my doctors have encouraged me to temporarily go up on gabapentin (Neurontin), a nerve medication I’ve taken for many years with good results. Because I despise taking drugs and never trust the “temporary” part, I’ve always resisted increasing the dose. That is, until now. Truth be told, a month into this flare, it took only a nudge from my doctor to increase my daily gabapentin in-take by 300mgs.

What a mistake. Fair to say, while the increase lowered my pain level by about three points, a HUGE improvement, the side effects were scorched-earth. I was wiped out to the point of being barely functional. This “never-a-napper” was falling asleep mid-day and I would wake with dementia-level disorientation. John had to remind me what day it was, where I lived, and what was happening in our lives.

I also suffered with suicidal ideation, compulsive thoughts, depression, joint pain, constipation, blurry vision and spatial difficulties. I’d traded one hell for another.

On the fourth night, I turned in bed and woke to the room (or was it my head?) spinning. The vertigo alerted me to the fact that if I continued this drug increase, I’d likely fall – and that could be catastrophic.

The next morning, with my doctor’s consent, I went off the extra gabapentin and, in its place, started Alpha Lipoic Acid. I took this supplement during chemo to ward off neuropathy, and it did the trick without side effects. Okay, to be fair, I wasn’t aware that it made my urine smell like burning tires as the chemo drugs masked that little nugget. Sorry, John.

That night, I experienced my worst pain ever, but, again, why? Even more confusing, I woke with honest-to-goodness relief, the last thing I expected. In fact, for the first time in weeks, I didn’t describe my morning swim as torture. As of this writing, the relief is holding, though threatening to return to the “I’m ready to die” level. But now, I have a taste of hope.

Still, I’m exhausted, scared and confused.

This is the essence of CRPS. It can come and go with little apparent cause. It can hide and seek, and its rules of engagement are ever shifting, ever evolving. It’s a devil that pokes its white-hot pitchfork of torture whenever, wherever it feels the urge. It’s crazy-making.

For all this madness, for all the uncertainty about my hell flare, these things I know for sure.

I did the right thing by getting the vaccine. COVID, or one of its variants, would (still might) kill me. I’m also doing my part to end this pandemic.

Chemo saved my life. While I’m betting it’s playing a hand in my current suffering, and will most likely present unknown damage down the line, I would not be alive without it.  

I was right to see my beautiful mother. I don’t know how much time either of us has, as I’m still a few years from “free-and-clear.” For my remaining days, I’ll always recall her reaction upon recognizing me, crying out my name and holding me so very tight. As my wonderful friend, Irene, reminds me, Mom and I have an epic love.  

Mom taught me to love myself, too. And I do. Completely. That love extends unconditionally to my CRPS, as it’s a part of me as much as anything is.

39 years into my dance with this mercurial disease, I doubt I’ll ever get ahead of it as its mystery and misery run too deep. Still, I can love it completely without complete understanding.

Cynthia Toussaint is the founder and spokesperson at For Grace, a non-profit dedicated to bettering the lives of women in pain. She has lived with Complex Regional Pain Syndrome (CRPS) and 20 co-morbidities for nearly four decades, and became a cancer survivor in 2020. Cynthia is the author of “Battle for Grace: A Memoir of Pain, Redemption and Impossible Love.”