At last, some answers for this CAD patient’s stubborn fatigue

Da-dahda-da! Off goes the blasted alarm on my husband’s phone at 7:45 a.m. How I hate it.

I didn’t get more than a wink of sleep. I tossed and turned, first under the covers because I was too cold, then with one leg and then the other poking out because I was too hot. I couldn’t get comfortable.

I yawned nonstop when I went to bed, but instead of falling immediately into dreamland, my thoughts began to race as soon as I closed my eyes. I couldn’t stop thinking and making plans, over and over, until that blasted alarm went off.

Insomnia is an indirect side effect of cold agglutinin disease (CAD), brought on by fatigue, anxiety, and temperature dysregulation. For me, it means another day in limbo, feeling achy and half-asleep.

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Daily dose of low energy

This is discouraging for a number of reasons. Recent blood tests showed an almost normal hemoglobin of 11.2 grams per deciliter (g/dL), which should have meant an increase in energy. The normal range for women is from 12 to 15.5 g/dL.

But my CAD symptoms haven’t diminished as much as I thought they would, and I’m still challenged to manage my limited energy and avoid something that would trigger hemolysis, or red blood cell destruction.

Every day, I wake up late and spend the first part of it in bed, catching up on current events and entertainment before chatting with my granddaughter on Zoom, and then it’s more current events and entertainment. I head outside to deadhead some flowers or cut one to bring indoors, but after this strenuous exercise, I return to my room and finish the day on the internet. Between 1 and 3 a.m., I’m finally able to try for another night of sleep.

I don’t like getting up late. I want to be more like my Facebook acquaintance with CAD who’s just finished a marathon, went on a safari, and hiked up Mount Kilimanjaro. (I get exhausted just typing that last sentence!) So I decide it’s time to try to understand what’s going on with me, and my search has recently yielded some possible answers.

The answer I seek?

In a webinar hosted by the Cold Agglutinin Disease Foundation, Jeremy Lorber, MD, a hematology and oncology specialist at the Cedars-Sinai Cancer Center in Beverly Hills, California, suggests that triggering the complement cascade can lead to a pro-inflammatory state and result in “out-of-proportion fatigue” that leaves a person with near-normal hemoglobin levels severely tired.

It seems that my body is like a computer that’s running a background program that’s draining my personal battery. Maybe I can stop berating myself for indolence. Instead of pushing to be more active, I can look for gentler alternatives. The marathoner isn’t me and I shouldn’t compare myself to her. I will take joy in my garden, not by trekking up Kilimanjaro.

I am learning new facets of living well with CAD.

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.