What MG Muscle Weakness Feels Like
Last updated: June 2023
Myasthenia gravis (MG) is an autoimmune disease that causes muscle weakness. But what exactly does muscle weakness feel like? To understand more, we took the opportunity to ask our Patient Leader Zach McCallum about his experiences with this symptom.1
Read on as Zach shares how MG muscle weakness impacts different areas of his body, what he does to help manage it, and how he communicates with his friends and family.
What does muscle weakness feel like?
For me it feels like I’ve run out power. In general, I feel it's a huge effort to move when I’m very weak. When my legs are weak, they feel heavy and unsteady. I feel like I can’t move them or trust them to hold me up. The weaker I get, the closer and closer my steps get to each other, until I have to stop and lean against something or sit down.
To climb stairs I have to get a friend to go behind me and help me lift each leg to the next step. I need help lifting my legs into the car. Also, I get pain in my hip flexors – basically my butt. It’s the same kind of pain you get from overdoing a workout: an achy soreness that feels like you’ve overused the muscles.
When my shoulders are weak, I feel like I just can’t lift my arms. Like there are heavy weights holding them down. I get T. rex arms – I can use my arms from the elbow down, but can’t lift them away from my body.
When my neck is weak, I just can’t hold my head up. It falls to the side or down, or I have to prop it up with my hand on my chin and my elbow on a table, or with a U-shaped neck pillow and a high-backed chair. As my neck weakens, I develop achy pain in my upper back from trying to hold my head up. I sometimes get a nauseating gagging sensation from my throat collapsing.
With mouth weakness I find myself sitting slack-jawed with a partially chewed piece of food in my mouth, waiting to regain the strength to continue chewing. I also start to slur my speech, and I get short of breath from minor exertion, or sometimes just sitting still.
Managing muscle weakness
I always have muscle weakness, but it gets more severe with heat, exertion, lack of sleep, sickness, or other stressors. The easiest to counter is heat – I tend to stay indoors in the summer and keep my thermostat very low (62 degrees Fahrenheit in winter and 68 degrees Fahrenheit in summer.)
I carry instant ice packs, so if I start to overheat I can do something about it. I always have Mestinon with me, and if I find myself getting especially weak, I will chew the tablet (yes, it’s gross) so it gets into my system faster. And I stay on top of my Mestinon schedule so I don’t miss doses.
I try to dress in cool fabrics and wear layers in winter. And I try to protect myself from sickness by keeping my vaccines up to date, wearing a mask, and using hand sanitizer or washing my hands frequently when I’m out of the house.
Walking tends to be hardest for me. I use a power wheelchair for most excursions or forearm crutches for short ones, like getting into a small, crowded restaurant. With crutches I have to stop and rest about every 50 feet. My crutches are custom-made for me and very lightweight. When I’m home I usually walk inside the house without aids, holding onto furniture if I need to. But if I’m weak I’ll use my crutches, and if I’m very weak, my wheelchair.
Showers and baths are hard for me. I have a curbless bench shower with an adjustable-height hand shower sprayer. I have grab bars in the shower and around the bathtub and toilet, and I have replaced all my towel bars with grab bars, so if I need support there is one there for me no matter where I am in my bathroom. I also plan bathing carefully, allowing myself an hour to lie down and recover after a shower, and use deodorizing wipes and sink baths so I don’t need to shower every day.
How do you communicate with your friends and family about muscle weakness?
My best friend and I have a rule: if he says I need to go to the hospital, I go. I am not allowed to say no. When I'm feeling weak, I tell my friends and family I’m feeling flimsy. They are really great about taking it in stride, helping me out when I need it, and encouraging me to rest.
If I have to wait for my jaw to start working again, I make a hand sign so my dining companions knows I’m okay and they can continue conversation. When I start to slur my speech, I have a friend who always teases, "You’d better sit down and take your meds, you’re starting to sound drunk." I appreciate that she and my other friends don’t get freaked out. They've learned to recognize when I just need to rest and when red flags are starting to fly.
When I make a new friend, I feel like there’s a training period where I have to explain MG, and they have to get used to seeing how it affects me. I set the tone – because I can laugh about it, they can relax, too. And because I can explain MG well and am forthcoming when things aren’t going as well, they know they can trust me to manage my MG.
How loved ones can help
One thing my friends and family do for me that’s immensely helpful is helping to explain MG to other people. If I’m really in trouble, having a friend who can go with me to the hospital and speak for me is hugely helpful.
I only have 1 or 2 friends who know me and my MG that well, but they are lifesavers. They’re also the ones I’ll talk candidly to when MG is getting me down. I can’t be relentlessly cheerful all the time, but I try.
My most frustrating MG symptom is _____.