After 30 years with SMA, I’m finally starting to do body stretches

Note: This column describes the author’s experiences with Cymbalta (duloxetine), Prozac (fluoxetine), and Celebrex (celecoxib). Not everyone will have the same response to treatment. Consult your doctor before starting or stopping a therapy.

After months of agony — and I mean agony — I finally decided to go off Cymbalta (duloxetine). As much as I was enjoying the blunted anxiety, I couldn’t handle the side effects any longer. I knew the dizziness and head twitching would probably return, but that was a small price to pay for a settled gastrointestinal system.

The transition back to Prozac (fluoxetine) went better than expected. I was looking forward to feeling like myself again for the first time in months. I could eat whatever I wanted! I wouldn’t feel bloated all day long! Things were finally looking up.

Then the pain started.

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A new source of pain

I have what the kids call dislocated hips. I can pop my left hip out of socket without much pain at all, a fun little piece of trivia I whip out at parties when I want to wow people with my abnormal body. It also just so happens to stress out new caregivers. I don’t blame them; if someone told me their hip could pop out of socket if I moved their leg a little too far to the side, I would be stressed out, too.

For the most part, my hips have never really bothered me. So when my right hip started hurting, I chalked it up to cramps of some sort. I’ve always struggled with bladder cramps — something I recently learned can result from sitting for extended periods of time — and my menstrual cycle is so unpredictable that I’ve come to expect the unexpected. But the pain didn’t let up. It got so bad, in fact, that I had to take Tylenol (acetaminophen) just to get through the day.

I really started to get worried when the pain moved to my lower back. I initially assumed it had something to do with my sacroiliac joint, but a trip to a sports medicine clinic disproved that theory pretty quickly; the pain was located more around my lumbar spine.

The doctor wondered, casually, but with enough gravitas to have my heart sticking in my throat, if something was wrong with my hardware. That’s right, hardware. I call myself a cyborg all the time — how can I not, when I have literal rods fused to my spine? — but hearing a medical professional say it with such bare-faced simplicity had my blood running cold. I had visions of emergency spinal surgery at the age of 30.

A quick X-ray soothed my anxieties: my hardware was just fine, though the screws in my spine weren’t exactly a sight for sore eyes. I was referred to orthopedics for a follow-up appointment and encouraged to experiment with one of my least favorite things in the world.

Wheelchair seating.

Fat wallet syndrome

When I first transitioned to my current chair, I struggled to adjust to the seating. To sit even somewhat straight, I had to put a foam wedge beneath my right hip. It fixed the problem — and created a new one.

Called “fat wallet syndrome,” it’s where your wallet is so thick your pelvis is uneven when sitting down. If you only sit down for short periods of time, it likely wouldn’t be a problem, but I’m sitting all day every day. My body never gets a break. It’s only logical that, after a year of wear and tear, I would feel it in the joint bearing all that weight.

At my mom’s insistence, I removed the wedge as an experiment. The pain improved somewhat — I even managed to swap Tylenol for its liver-friendly cousin, Celebrex (celecoxib) — but I was definitely struggling by the end of the day. I had resigned myself to at least several more weeks of agony.

A week after my appointment with sports medicine, I drove to Gillette Children’s Specialty Healthcare for a physical therapy session. When my therapist asked how I was feeling, she abandoned all her plans for our session in favor of showing me a set of five stretches. I’ve done some stretching over the years, but definitely not as much as I should have. Now I was paying the price. To fix the damage and get a handle on the pain, I had to start stretching. Religiously. Even though it hurts.

And let me tell you, it hurts.

I’ve been stretching twice a day for a week now. The pain gets a little better every day. I’m frustrated, of course — I’m a sucker for instant gratification — but the body doesn’t heal overnight. I’m starting to see some relief on the horizon, but until it arrives, I’m going to stretch like my life depends on it. And scream while doing so.

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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.