My Battle With Chronic Pain and SMA

In my life, aches and pains have been constant companions. In my younger years, I chalked them up as part of the growing-up process with SMA, something we all had to endure to some extent. We all have bad days where we hurt and are sore or overdo it. After all, society often teaches us to be tough and have a high pain tolerance. But my journey with chronic pain, intertwined with spinal muscular atrophy (SMA) and a life-changing spinal fusion surgery at the age of ten, showed me a different perspective.

Overshadowed by scoliosis

Before that pivotal spinal fusion surgery, my life was overshadowed by scoliosis, a condition that had cruelly twisted my spine into a 90-degree curve. The surgery aimed to bring it back to a more manageable 45-degree angle, but it came with its own set of challenges. I now have titanium Harrington rods in my spine, securely anchored to my shoulders and hips. I can feel the rods in my shoulders with my fingers.

My hips have been an ongoing challenge, like trying to fit a square peg into a round hole from being deformed at birth. This bodily misalignment, combined with the unwelcome companionship of arthritis and osteoporosis, amplifies my pain, especially when the cold weather sets in.

More pain because of a accident

After a freak accident of falling out of my wheelchair I found myself even worse off and in more pain having to deal with fractures in my wrist and femur that didn’t heal properly due to the doctors being unable to operate because of my SMA and osteoporosis. They said my bones were so translucent on x-rays I’m virtually a ghost.

Because of this accident my joints ache and throb daily for hours at a time. And to think I always wanted to know what it would be like to break my arm like a normal kid? I regret thinking that now that I know and 10/10 do not recommend.

Carrying on silently while in pain

My days are spent in my power wheelchair, often in a fixed position for hours at a time. My neck, weakened and prone to fatigue, throbs with a relentless burning pain. It's safe to say that some discomfort is expected, but the magnitude of my suffering was something I silently carried for years.

About eight years ago, a new, excruciating pain emerged, gradually weaving itself into the fabric of my daily life. It centered around my right ribcage and sent me on a whirlwind of doctor's appointments in search of a diagnosis. The culprit? My small, stunted torso was causing the cartilage between my ribs to tear internally. My neurologist and orthopedic specialist initially recommended muscle relaxers, but they weren't suitable for my breathing needs and did nothing to alleviate the pain.

Finally exploring pain medication

I tried various different approaches to alleviate my discomfort, from changing my transfer techniques to experimenting with different sleep positions, repositioning in my wheelchair more throughout the day. Regrettably, none of these tactics provided any relief.

It was only when I embarked on the challenging path of pain medication that the full extent of my suffering became apparent. I vividly remember shedding tears of relief when I realized just how much pain had silently eroded my life. Pain medication allowed my body to experience a level of comfort that had eluded me for years, making me feel like a semblance of a normal human being for the first time in a long time.

The clarity that pain medication brought was a profound revelation. While for many, over-the-counter remedies like Tylenol or ibuprofen may suffice, I urge my fellow SMA patients not to hesitate in seeking help when pain becomes an insurmountable barrier.

Effective opiod regimen

Opioids, while not a one-size-fits-all solution, have been my lifeline, significantly enhancing my quality of life. They don’t come without downsides either but what does these days? With an effective opioid regimen in place, my sleep patterns improved dramatically. No longer did I awaken ten times a night, either due to the need for repositioning or the relentless pain my back, hips and tailbone.

My body finally had the opportunity to rest, replenishing my daytime energy levels and reigniting my desire to be more active. The relentless rib pain that had tormented me vanished, allowing me to live a more vibrant and engaging life. To be clear, I'm not entirely free from everyday aches and pains. However, they are but distant echoes of the suffering my body once endured.

Wish I had sought help sooner

Looking back, I regret not acknowledging my pain sooner and seeking help. It's a crucial reminder that reaching out for assistance is an act of strength, not weakness. There exists a well-founded stigma surrounding opioids and pain medication in general. However, society often overlooks the silent struggles of those living with chronic illnesses.

When I shared my experiences with pain medication within the SMA community, I encountered a range of reactions. Some suggested alternative remedies like CBD and THC, but, unfortunately, they provided no respite for me. While others were in the same boat as myself.

Pain thresholds are as unique as the individuals who experience them, especially within the context of SMA. It's crucial to recognize the emotional and physical toll this relentless pain exacts.

Pain relief is unique to the individual

My hope is that this article will serve as a beacon of understanding and empathy, encouraging both SMA patients and their caregivers to confront their pain and explore the available options for effective pain management. Find what works best for you to have a happy pain free life safely.  In my journey with SMA, I've learned that pain can be a relentless adversary. Yet, with the right support and a willingness to engage in open dialogue about pain management, we can take the downside of being in pain and find a solution to make things better.

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