The Irony of Managing Symptoms of McArdle’s Disease

DISCLAIMER:I cannot tout my approach to the management of this disease as safe or appropriate for others. Speaking only for myself, I know that exercise is the only effective way I can manage the symptoms of McArdle’s disease.  It really is up to you to be your own advocate and be as informed as you can. Ask questions. Learn about the human body. Take care of yours.

The symptoms of McArdle’s disease – exercise intolerance, muscle cramping and injury, weakness – often drive people with the condition away from an active lifestyle. It’s only natural to stop doing something that causes you pain.

The irony is that the more sedentary we are, the more potentially debilitating this disease.

The amazing machines in our muscles risk injury much sooner as we grow older, and our metabolism overall starts to slow, and our basic resting levels of energy start to fall off.

Our metabolism is a very efficient ballet of interdependent chemical reactions. Feedback from one activity is the cue that drives the rate of another. When energy demands on muscles are low, the body makes less energy available to them.

So how do you effectively manage the symptoms of a disease that makes exercise a dangerous endeavor? For me, the answer is by exercising.

More specifically – the kind of exercise that really sucks to undertake with McArdle’s disease:

  • Walking up inclines or stairs
  • Jogging for short spells, or sprinting for even shorter ones
  • Swimming
  • Lifting weights
  • Hitting a heavy bag
  • Planks

Any of these can result in some serious McArdle’s-related injuries and send you to the hospital. Most people with the disease wouldn’t dream of undertaking these or recommending them to anyone else (I certainly would not.)

And yet, my symptoms are most manageable only when I train my muscles to face such stimulus. I don’t want to go to the hospital, and that’s why I exercise every day. It works wonders for my ability to climb stairs, or walk through the mall with a friend without getting hypoglycemia. 

It doesn’t apply to everyone, we all have different problems coincident with this metabolic disease of ours. Some of us are in wheelchairs, some of us have diabetes. What the “training stimulus” looks like really has to be relative to your unique baseline.

But so too is physical fitness for “normal people.” They share the same amazing metabolic systems that up- and down-regulate in real time to conserve resources and operate as efficiently as possible. “Normal people,” too, get weak when they don’t train. “Normal people” get sick and hurt their muscles when they over-do it.

People with McArdle’s disease have to train and work hard to reach a capacity for exercise that most people take for granted. We may be reminded of this each time we do something as mundane as folding laundry, or tying our shoes, or putting air in our car’s tires.

For me, managing McArdle’s and avoiding injury exercise is by no means something I think I’ve figured out. It is a work in progress, and I am sure it always will be. (Again, something I think we McArdle-ers have in common with “normal people.”)


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