Despite my sacrifices, I’m still dealing with pain medication side effects
Note: This column describes the author’s own experiences with fentanyl and other pain medications. Not everyone will have the same response to treatment. Consult your doctor before starting or stopping a therapy.
“You really know pain, huh?” someone asked me, eyes wide with concern.
In response to their offering me a glass of wine, I had just declined by rattling off my entire list of pain medications, including four oral ones, two transdermal patches, almost all daily, and three shots I get in my spinal area and occipital nerves every few months, give or take. I won’t bore you with all the names the way I do in person.
The shocking part for most is the quantity. My dosages are the lowest possible — my doctors don’t dare to prescribe more than that, as I can be quite sensitive to side effects — but they do add up. We haven’t yet counted the medications I take to alleviate nausea or balance my gut motility with the side effects of fentanyl, either.
I nodded and sheepishly played with the remote on my wheelchair. “Yeah. I do know pain.”
Did you know that severe scoliosis from SMA can lead to a condition called kissing spine? I didn’t until I did. Sounds adorable, but it’s meant to describe the irritation that occurs when there’s friction between spinous processes (the bony projections at the back of the vertebrae). The formal name is Baastrup’s disease. Considering the level of pain it gives me, I think “anger” is a better descriptor than “irritation.”
I can’t describe to you how much I miss Champagne and cocktails.
The ache for alcohol is worse in social settings, when everyone else has a glass in hand. But for me, it’s abstinence or an accidental trigger of inflammation, just like it’s a concerning amount of pills for breakfast or being bedridden for life.
My brother and I joke about how long my kidneys and liver will function, what with everything I’m asking them to filter. I don’t know how long we’ll be laughing. At least my sacrifices are predictable for my present situation. Or so I tell myself.
What’s the number for the psychic, again?
The trade-off for missing out on fun is function. That is supposed to be the deal. But as doctors warn, the devil is in the details — namely, the warning labels on drug packaging and the instructions for care.
The hope is that side effects abate after a while. Once your system is familiar with its new “friends,” you should go back to normal, or as normal as possible. More often than not, that does happen. You’d certainly think that would be the case after taking the same dose of fentanyl for a year without issues, as I have.
Every now and then, however, for some reason unknown to me, the opioid side effects return when I change my fentanyl patch. Dry mouth is the best of it. I can deal with that. It’s the drowsiness and vomiting that sap my will to live.
Unfortunately, I am still recovering from my body deciding to up its sensitivity to opioids a couple days ago.
I didn’t quite know what was wrong with me at first. My eyes had about as much strength as Sleeping Beauty after she touched the spindle. Prince Charming could’ve kissed me, and I wouldn’t have felt his lips brush mine. I thought my body was strained from ovulating. It wasn’t until I threw up the following morning that I put the pieces together, recalling the initial dosage trials I had in the hospital.
Sleeping Beauty didn’t have to skip lunch and liquids after she awoke. I did. The result was that I felt too weak to even eat dinner properly. I’m still not consuming the amount of calories I should, due to a lack of appetite. My regular sleep schedule and motivation are shot, too. I’ve got brain fog that takes minutes to penetrate.
It’s hard not to feel betrayed by something that’s supposed to help me. The deal was supposed to be that I take an amount of drugs that reminds my mom of her grandmother and make sacrifices for my health like a good girl, and I get to stay out of bed. The drugs weren’t supposed to keep me in bed.
I’ll regulate and catch up on my responsibilities eventually. But I won’t lie: My frustration with my body’s unpredictability makes me wonder if I shouldn’t just drink the wine one day. Probably not. Still …
Note: SMA News Today is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of SMA News Today or its parent company, Bionews, and are intended to spark discussion about issues pertaining to spinal muscular atrophy.
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