Struggles with Myasthenia Gravis Fatigue and Pain

I will be doing a series of articles about how to make life a little easier when you have myasthenia gravis (MG). The articles will be centered around bathing, grooming, self-care, entertainment, getting around, cooking, cleaning, dealing with fatigue, pain, and home safety.

I will discuss ways I have found to reduce fatigue, pain, and make my life easier with MG. I’m hoping something you read in my subsequent articles will help you or someone you love to improve their quality of life after a myasthenia gravis diagnosis.

When fatigue hits

Fatigue and pain appear to be a regular companion to myasthenia gravis patients. Just bathing and getting ready for the day can be a major challenge, much less finding time when you feel well enough to enjoy life, even just a little.

Fatigue can hit any time of the day. It can hit us at the end of the day, early in the morning, and/or after using a particular muscle for a while. Fatigue is a lack of energy, not just physically, but mentally, too.¹

Why does it occur?

So, why do we get fatigued so easily? Myasthenia gravis is a neuromuscular disease, which causes muscle weakness. Muscles have receptor sites that receive nerve signals. Those of us with MG have an immune system that produces antibodies.²

Those antibodies block or destroy many of our muscle receptor sites, which in turn causes our muscles to receive less nerve signals. By reducing the nerve signals, muscle begins to tire and become weaker.²

In my experience, this fatigue can and does cause weakness, which in turn, causes pain. At times, my pain may be mild to moderate, other times it may be acute. The intensity depends on activity.

What does it feel like?

This is the best way I’ve been able to describe what the "fatigue" feels like to me. When a person exercises, their muscles tend to get tired and sore. However, when they over-exercise, that tiredness and soreness can become so bothersome, they don’t want to move or exercise until it improves.

The neck pain I experience is as if I slept wrong, but worse. The main differences for me are that myasthenia fatigue and pain can sometimes get much worse than the fatigue and pain caused from over-exercise. That fatigue is also temporary in that once muscles recover, fatigue and pain is over. Mine isn’t - it usually worsens over time.

MG and pain

People with MG may frequently hear, "Myasthenia doesn’t cause pain!" Based on direct cause and effect, that is correct. However, just as those that over-exercise have muscle stiffness and muscle pain, we do, too.

People with MG may have pain because we are straining our muscles every day by doing everyday activities. Repetitive usage of those muscles may not reduce the pain, but make it worse - at least for me!

There are many activities and circumstances that can cause muscle fatigue and pain in MG. Some of those activities can be as simple as brushing your teeth or as complex as cleaning the house or gardening, especially in the summer heat.

Since we are all different with different degrees of fatigue and pain, we have to figure out what we can do to improve our day. After all, we have family, friends, and a life we’d like to get back to!

Stay tuned for my upcoming articles about overcoming daily challenges with MG!