New issues arise while seeking answers to my progressing symptoms

My regular readers know I’ve been losing function in my right arm, making many activities of daily living challenging. The pain, weakness, and stiffness I experience when I try to do anything with that arm began suddenly and has progressed rapidly this year. I’m now experiencing similar symptoms in my left arm. Given that rapid progression isn’t the typical pattern for my facioscapulohumeral muscular dystrophy (FSHD), I’ve been back on the medical merry-go-round to see if something else is going on.

I saw my neurologist, who performed an electromyogram and a nerve conduction study. The tests showed a pinched nerve in my neck, unspecified problems with my shoulder and elbow, and overall weakness in my upper arm, forearm, and hand. The testing also confirmed carpal tunnel syndrome in my wrist. He recommended I see a hand specialist for treatment. I told him I’d think about it, but I’m pretty averse to surgery these days.

Although I knew FSHD was contributing to my muscle weakness, I wasn’t convinced it was the only problem. Still seeking answers, I consulted with a rheumatologist. He ordered multiple blood tests and magnetic resonance imaging (MRI) on my right shoulder and upper arm.

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The blood work didn’t reveal anything of note, but the MRI showed a lot of damage to my right shoulder, including bursitis, tendonitis, and damage to the labrum. He advised me to consult an orthopedic surgeon about possible shoulder surgery. As with my neurologist, I told him I’d have to think about it. I was concerned about the recovery from major shoulder surgery, as the muscle atrophy caused by FSHD might make things worse, not better.

My rheumatologist remained uncertain about what was causing the problems with my right arm. He suggested that I consider a biopsy of my tricep muscle to rule out other conditions. Still hoping that we’d find another cause, I agreed.

The side effects of recovery

I had it done on July 28. I thought it would be a needle biopsy, but instead, I now have a 3-inch incision on the back of my right arm to accompany the scar on my right shoulder from the 1972 biopsy that resulted in my FSHD diagnosis.

I tried moving around a bit with the fresh incision and soon realized that I wouldn’t be able to sleep in bed for a while. I have a lot of difficulty these days rolling over and finding a sleeping position that causes minimal pain. It takes many small movements to reposition a shoulder, elbow, hip, or knee. My mother-in-law, who used a lot of Pennsylvania Dutch phrases, would have referred to this as “rutching around.” I definitely rutch in bed!

I spent four nights trying to sleep in my lift chair. Each day, I woke up with worsening soreness around my tailbone. But although I applied an over-the-counter (OTC) ointment every morning, the sore areas became full-blown pressure sores.

When I’ve noticed soreness in this spot previously, applying OTC products such as zinc oxide creams typically cleared it up in a day or two. That didn’t happen this time. I returned to sleeping in bed, staying off my right shoulder and trying to be more stationary.

A good friend with some medical background suggested I try a different OTC cream that she said had worked for her. I didn’t want to see a doctor about this if I could avoid it, so I gave the cream a try. Over the past week, the sores have slowly healed. I still have a small spot that causes some discomfort when I’m sitting, but I think I’m on the road to full healing.

I have friends who quite literally live in their recliners. One thing’s for sure: That won’t be me as I move forward in my FSHD journey!

Note: Muscular Dystrophy 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 another 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 Muscular Dystrophy News or its parent company, Bionews, and are intended to spark discussion about issues pertaining to muscular dystrophy.