Stuck in a Spasm Chasm

Days two through four out of my Self-Care journey have focused on the bane of my existence: Spasticity.

Dr. Tara Tobias explains spasticity as a “movement disorder characterized by a velocity-dependent increase in muscle tone due to hyper-excitability of the reflex arc”. In other words, my body resists any attempts to lengthen certain muscles. If I try to extend my arm by activating my tricep, a resisting reflex kicks in contracting my bicep instead. This has resulted in a significant loss of functionality, tighter muscles along with weak, opposing muscles.

A spastic body fights itself, forcing unused muscles to atrophy and shorten over time. Eventually, an arm that could once externally rotate, extend, and rise remains static, tight, and curled against my body.

What’s sneaky about spasticity is how when you notice that it’s affecting your hand or foot, it’s already compromised your shoulder and hip. Then you start focusing on fixing your hand and foot instead of the shoulder and hip that must be corrected first.

Dr. Tobias’ videos on YouTube have been both empowering and frustrating because YET AGAIN, I discovered something years after I needed the information. YET AGAIN, I’m the asshole scouring the internet trying to figure out what to. YET AGAIN, I’m reminded how healthcare has degraded. I miss the days when you got to spend time with professionals who got to spend time researching your disease and educating you on the best way to approach it. But I’ll save that for another post.

I’ve learned more about spasticity this week from Dr. Tobias than I have over the last eight years suffering from it. These last four days have involved stretching, immobilizing different body parts, adding in yoga sequences, and using props to extend and expand what I can’t lift or rotate on my own. These conservative approaches to spasticity are more straight forward than a medicinal approach like Baclofen. Stretching or yoga for MS always helps, whereas potential side effects like drowsiness, nausea, and seizures from taking a drug could be harmful.

I’ve yet to figure out if Baclofen works for me because this drug requires the user to mess around with dosages, time of day, frequency, and functionality. I’m allowed a daily, 80 mg maximum when taking this 10 mg pill which means a lot of experimenting. Some days taking 2 pills at lunchtime knocks me on my ass for a few hours but other days I feel nothing. Because of this variability, I’ve stopped taking Baclofen in the past due to experiencing too much aggravation in lieu of any measurable gains.

What I didn’t realize until recently is that it can take weeks before some patients notice a decrease in spasticity. Since I’m pseudo-quarantining for the next two weeks anyway, I’m going to keep experimenting with this drug to see if it deserves to part of my daily arsenal.

Ultimately, we all must implement a variety of techniques to live well with our specific chronic conditions or circumstances. Since I like to work smart, not hard, having a plan of attack that makes sense to me matters. I’m glad I’m giving myself 100 days to figure this out.

Original Image: Unsplash / Fernando Jorge

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