The Confounding Impact of Post Exertional Malaise: Part Two

 Note: This is a Part Two of a blog about Post Exertional Malaise (PEM).  To read Part One, click here. 

I used to be a very active person.  I love nordic skiing, hiking, climbing, and backpacking.  My husband and I like to garden and go birding in the evenings.  Back in Fall 2022, when I was first struggling with Long COVID symptoms, I found myself late canceling on climbing and camping trips with friends.  Gardening had become exhausting and I didn't know why.  So I did what any American would do - I assumed I contracted some form of laziness and looked for something new to motivate me. 

This is when I found the wonderful small coaching business called Catalyst Rowing. For any of you who DON'T have PEM, I highly recommend checking them out!  Martha Laugen "Coach Martha", is an amazing woman who has created a safe and inclusive fitness community focused on working out with indoor rowing machines.  I immediately fell in love with the sport.  As a physical therapist I also appreciated that every workout could be modified to my body's needs.  And the community of people who attend the classes?  They are also amazing, fun, and supportive.  Icing on the cake. 

By the winter I was attending weekly (often twice weekly) classes and enjoying every bit of it. While my form improved on the machine over time, I was a little puzzled at my continued lack of fitness.  Nordic ski season had come around by then, and I could barely ski one kilometer without needing to stop for the day.  My norm was to ski five - ten kilometers a session.  Every year I look forward to spending a week skiing up in the Ironwood and that January I was only able to ski one or two of the days and had to rest for the remainder of the trip.  It was very frustrating.  

I've had issues with low iron in the past so I checked my levels with my doctor and sure enough, they were a little low.  So I backed off of any intensive workouts and focused on my nutrition for a month or so.  My iron levels went back up, but my tolerance for exercise still remained low.  

Around this time is when the Monday Sicknesses began.  I'd wake up with a fever, headache, flank pain, and extreme exhaustion.  Often I'd need to take the day off.  Sometimes I'd need the full week.  I would sleep most of the day, unable to even do light house chores.  By Saturday mornings I was usually recovered enough to head to rowing class or go out skiing.  But then... the whole cycle would start all over again the next Monday.  What the heck? 

If you've read my first blog post that is my Long COVID story, you'll probably remember that I spent most of 2022 and 2023 thinking my symptoms were urinary tract infections.  Urinary tract dysfunction is a very common symptom of Long COVID.   So, every time I had the Monday Sickness I thought it was another recurrence.  It's really hard to see the forest through the trees when you are struggling and trying your best.

I finally put the pieces together in December 2023 after having a hysterectomy to remove fibroids and endometriosis which were contributing to my bladder symptoms.  But when the Monday Sickness returned (just without the bladder and flank problems), it was clear something bigger was at play -- Post Exertional Malaise (PEM).  PEM, according to the CDC is the worsening of symptoms following even minor physical or mental exertion, with symptoms typically worsening 12 to 48 hours after activity and lasting for days or even weeks.

Researchers don't know the exact cause, though PEM has been recognized for decades in people diagnosed with Myalgic Encaphilitis/Chronic Fatigue Syndrome.  Theories include mitochondrial dysfunction leading to poor muscle tissue recovery, autoimmune disease relapse, lack of oxygen/blood flow to the brain, gut dysbiosis, and more.   What is soundly agreed upon is PEM is damaging to your body, and should be avoided.  

That's right. YOU CANNOT train your way out of PEM.   This is very hard for many people to understand.  When you feel tired and out of shape, moving more feels like the right thing to do for a lot of us.  But think of it this way.  Have you ever had a severe form of the flu and thought, "I know what will solve this.  I'm going to start training for a marathon today." Or told a loved one in the tumult of cancer treatment, "I know just the thing that will help you. Let's go do Crossfit." Absolutely not!  I would hope most of you agree in these cases that some movement, sure, is good.  But not too much, or this person with the flu, or with cancer would have a hard time recovering.  It is the same with PEM.  

My time is up for this post and I need to rest my brain.  But, do know there are steps and therapy you can do to treat PEM.  That will be the subject of Part Three of this blog series.