How music can help us process chronic pain, and even provide some relief
Distraction, relaxation, and reduced pain perception are some of the benefits
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Since the deaths of Dolly Parton and Tim Curry last week, social media has been flooded with moving tributes. “Jolene,” “9 to 5,” and “The Rocky Horror Picture Show” soundtrack stay with us for their cultural and emotional impact. Due to the music, lyrics, and nostalgia, classics like these endure because of how they make us feel.
Another song I really feel whenever I hear it is “Como la Flor,” by Selena y Los Dinos. I discovered it through the 1997 biopic about the late singer, but decades later, it struck a new chord. It describes a relationship, likening heartbreak to a wilted flower. But one refrain from the chorus screams something different for me.
I noticed it about 10 years ago. A friend of my husband’s was in a Selena cover band, so we went to see them perform. I was singing along when I was struck by the words coming out of my mouth:
“Pero, a-a-ay, ¡Cómo me duele!/ A-a-ay, ¡Cómo me duele!”
That translates to “But, oh, how it hurts me! Oh, how it hurts me!” I felt that viscerally. I wasn’t heartbroken, but a-a-ay, I was hurting (and still am). Shouting those lyrics has since become a form of catharsis for me.
This was just a few months after I was diagnosed with sarcoidosis but had been living with chronic pain for nearly a decade. Longer, actually, if I include the gastrointestinal problems I’d had since childhood, the headaches since high school, and the gynecological issues since college. But this was different.
This time, the pain was overwhelming, widespread, and debilitating. My whole body hurt, and I didn’t know why. My muscles were terribly sore, as if I’d run a marathon while carrying a 50-pound dumbbell in each hand. My hands and feet swelled so severely that I was afraid my skin would burst. My joints ached, and my knees felt like they might shatter when I tried to stand up.
‘It’s enough to drive you crazy if you let it’ (Dolly Parton, ‘9 to 5’)
It took years to figure out what was wrong, and even longer to fine-tune my treatment. My rheumatologist started me on prednisone, but that was meant to be a temporary fix. The plan was to narrow down and confirm a diagnosis, then find a more suitable long-term treatment and wean off the steroid.
Unfortunately, that wasn’t so easy. My symptoms resembled several conditions, but didn’t quite fit the diagnostic criteria for any of them. (Because it is a rare disease, sarcoidosis wasn’t on my doctors’ radar yet.) We tried countless treatments, but none seemed to hit the right note. Eventually, the side effects from prednisone became unbearable, yet without it, everything worsened.
When I was finally diagnosed with sarcoidosis, it was music to my ears. With this information, targeted treatment options became clearer. Acthar Gel, combined with a few other medications, felt like a miracle. I noticed a difference in my pain, swelling, and mobility right away. I finally started to feel some relief.
Although it was clearly helpful, it wasn’t a perfect solution. I was still suffering, albeit less so than before. After a few years, I began to experience side effects similar to those of prednisone, so again, it was time for a change.
‘So I’ll remove the cause, but not the symptom’ (Tim Curry as Dr. Frank-N-Furter, ‘Sweet Transvestite’)
Medications designed to treat the underlying cause (inflammation) can still leave us with symptoms to address individually. That includes an inhaler for shortness of breath and topical medications for my skin. I try to manage my remaining pain with cannabis, heat, and medicated patches.
Sadly, I’m not alone in this. According to a survey of over 2,700 people with sarcoidosis, “a majority of patients report having chronic pain of moderate to severe intensity, despite heavy use of opioids and other pain therapies.” It can affect every aspect of our lives — our ability to work, do chores, or even socialize — especially our mental health.
That’s why it’s so important to find organizations, websites, and groups associated with our conditions. We can discover tips and tricks for living well with chronic illness, and connect with others who can relate to our experience. Best of all, we can share what we’ve learned to help other patients, too.
That’s what I always hope to do with this column, and it’s why I recently joined fellow advocates Leila P.L. Valete and Deb Constein for the “AiArthritis Voices 360 Talk Show” (Episode 125, available Sept. 6). In honor of Pain Awareness Month, we discuss how we talk about our pain, and why that matters.
Just as there’s no one-size-fits-all approach to sarcoidosis, there are myriad ways to deal with chronic and acute pain as well. Even music can offer distraction, relaxation, and reduced pain perception. Sounds like it’s time to turn up the volume!
Note: Sarcoidosis News 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 Sarcoidosis News or its parent company, Bionews, and are intended to spark discussion about issues pertaining to sarcoidosis.
Paula Polite
Kerry, Your experiences are so relatable. Thank you for sharing with us. It truly helps to manage living life with sarcoidosis knowing we’re not alone, and there are others sharing similar experiences.
🦋 Kerry Wong
Thank you, Paula. Yes, it means so much knowing we have a community as we go through this sarc life. Thank you for reading, and for all you do with Sarcoidosis Research Institute. 🦋