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A Bad LEMS Flare this Week
It started off like any other week, until I decided to do something a little off routine.
I’m about to travel soon and wanted to test out a small camera I have, to see if it can work for me and gain some confidence using it. Off I went to the Fort Worth Botanical Gardens to give it a go.
Getting there and checking in, I learned they no longer allow cars to drive up to the gardens. This meant a longer than expected walk, but nothing I wasn’t used to from my daily walks. The temperature was good, but misty with extremely high humidity. I walked the Japanese Garden, a formal garden, and a natural habitat area. It was more up and down than my usual walks but not too bad. Still, as I walked back down the road to leave the gardens, I was hot and soaked in sweat. Not what I had bargained for. I’ve had some recent left shoulder weakness, but returning to me car, both my shoulders felt very weak, extending up my neck. My hips were groaning too. When I got home, I did not feel well, and my shoulders felt weak and painful. I didn’t bargain for a full LEMS flare but stumbled into this one. This was one of the worst flares I’ve had in a long time. Two days later and my trapezius muscles in my shoulders have not fully recovered.
I tell this story to remind myself and everyone, to be careful when doing activities off routine. How did this happen to me?
I checked my step count on my Apple Watch and 6,000+ steps is pretty normal for me. Well within what I do every day. Perhaps it was the more uneven terrain that contributed. But there are two other factors which I think contributed much more. I was inside the fourth week of my IVIG schedule, a period when my antibodies are waining. LEMS issues rear their head during these last days before my next infusion. And probably the biggest factor, getting overheated. LEMS doesn’t like heat, and I unexpectedly stressed my body from the extremely high humidity and sweating. I’d like to think I’ve learned a lesson here. It’s a reminder to me and all of us, pay close attention to the details. Be mindful of activities off your normal routine! -
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