a woman's experience with myasthenia gravis fatigue

Unpredictable Fatigue with Myasthenia Gravis

One of the hardest parts of dealing with myasthenia gravis (MG) is fatigue. Especially never knowing when it's going to hit or not knowing how long that fatigue is going to last!

Everyday-fatigue

For the last 4 months my fatigue has been very minimal. You know, the normal stuff ... like feeling fatigued when it's time to take a Mestinon, or after I was purposely doing something that I knew would set the fatigue off. For me, this can be any excessive small motor skill, like practicing penmanship or even just writing a check.

One day when I felt good, I decided to bake and the recipe called for an egg white to be whipped up. Not a big deal. I was going to use my electric mixer. But, you see, I have a problem with handheld appliances. I always seem to burn them out within about 6 months of use. And yeah, you guessed it ... my mixer wouldn't work so, I had to do it by hand.

Even just normal tasks to keep up my house are difficult. And because of the fatigue I must rest in between trying to get things done.

Unpredictable fatigue

In addition to the things that I know can set off my normal, everyday-fatigue, there is also fatigue that I never know when it's going to hit. For example, there are the times like today when I just wake up fatigued. My whole body, mind, and everything are just so exhausted.

Even when trying to lay down, I can’t rest because I’m too fatigued. I need to do nothing, but everything hurts too bad to relax. The longer this goes on the worse the fatigue gets! My voice goes out and the dictation on my computer can't even figure out what I'm saying!

My MG triggers

What triggered this onset? Over the last 4 months I have done a little bit more than I'm used to - but not majorly. In the last 2 weeks, I did have to make four 1-hour round trips that I drove myself.

On top of that, the weather's been pretty wacky. It went from almost being warm enough that I needed the air conditioner, to then dropping down overnight to light freezing. You know that kind of stress with the weather doesn't work well with my MG either.

Am I going into a flare?

When I start getting this fatigued and it's just out of the blue, there is always that underlying question for me: "Is this just something that's going to work itself out ... or am I going into another flare?"

There's no way to really tell ... all I can do is wait and see. That's hard because if I don't get enough physical activity and I don't sleep well, it also makes some of my other health issues worse. But with the MG, if I get too worn out then I will go into a flare and just get pulled down farther. It's a mighty fine line of when to do stuff and how much.

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