Post-exertional malaise leads to a cycle of crashes and comebacks
PEM perfectly describes my experience over the past week
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Although my Scrabble scores may suggest otherwise, I have always been a logophile — a person deeply fascinated by and enamored with words. So it was with double delight that I recently discovered a new term: post-exertional malaise (PEM).
PEM is defined as “a delayed worsening of symptoms that occurs after minimal physical or mental activity.” Not only is this a new term for me, but it also perfectly describes my experience over the past week.
I was finally discharged from the hospital on Friday, Feb. 20, after receiving four units of red blood cells. At that moment, I felt fantastic. The transfusion had boosted my hemoglobin to a remarkable 8.2 grams per deciliter (g/dL), although still well below the normal range for women (11.6–15 g/dL).
It was enough to make me feel like I could run a marathon or swim a mile. I was brimming with newfound energy. For someone with cold agglutinin disease (CAD) — a rare, autoimmune, hemolytic anemia in which cold-sensitive antibodies destroy red blood cells — this was extraordinary. My CAD symptoms usually include fatigue, brain fog, and joint pain.
A week of ups and downs
That Saturday was less promising. While I didn’t feel as awful as I had before the transfusion, I simply couldn’t muster the energy to get out of bed. My lightheadedness had returned, and I found myself holding on to furniture for balance as I moved around the house. By evening, however, I had improved enough to visit a friend’s home to watch an Auburn University basketball game.
That Sunday brought another downturn. I stayed in bed, frustrated with myself for feeling this way and confused about what was happening within my body. I braced myself for bad news on Monday, convinced my hemoglobin must have dropped again.
On Monday afternoon, my friend drove me to my doctor’s appointment. I felt so well that I didn’t even need a wheelchair. My optimism was validated when my blood test results came back, and everything was stable. Buoyed by this news, I accompanied my friend on errands around town: first to the bank, then to deliver a change of clothes to her husband, and finally to pay an electric bill.
But on that Tuesday, I was back on the emotional roller coaster. I stayed in bed, passing the time with movies streamed online. By Wednesday, I had regained my strength and spent an hour with my dad, who hadn’t seen me in a month and was worried about my health.
The entire week was a cycle of highs and lows. The intervals between these energy swings have grown shorter now, but at least I no longer feel confined to my bedroom.
There’s a name for this!
Looking back, I realize this erratic pattern wasn’t random — it almost exactly matches what I’ve since learned is called PEM. Triggers for PEM include physical activities like brushing teeth, sitting, and cooking, as well as mental effort and even emotions. One of the most challenging triggers for me is interacting with people, whether in person, on the phone, or even by email.
These conditions also mirror the symptoms I’m experiencing. My sleep pattern is disturbed, and I’ve been having vivid dreams, like finding myself in the middle of a cattle stampede. I also struggle with short-term memory problems and orthostatic intolerance, which is a sense of disorientation when changing postures.
For me, one of the most frustrating symptoms is my inability to find the right word at the right moment. For example, this past Friday, a friend mentioned looking forward to the wonderful smell that follows a spring rain. It took me several minutes to recall the word “petrichor,” a delay that felt like a betrayal of my logophile identity.
As I write this on Sunday, March 1, I find myself wondering what will happen on Wednesday, when I receive my next infusion of Rituxan (rituximab) and Bendeka (bendamustine). At this moment, it feels as though I’ve stepped off the PEM roller coaster. Will I be back on it once the infusion is over? Only time will tell.
Note: Cold Agglutinin Disease 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 Cold Agglutinin Disease News or its parent company, Bionews, and are intended to spark discussion about issues pertaining to cold agglutinin disease.
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