Preparing for and Managing MG Muscle Weakness

A myasthenia gravis (MG) trigger is anything that makes MG symptoms worse. Everyone's triggers can be different, but understanding what worsens your MG can help you manage your condition.¹

We had the opportunity to hear from our Patient Leader Mallory San Nicolas about what triggers one of the main symptoms of MG: muscle weakness. Read on as Mallory shares how she takes a proactive approach to managing this symptom.²

How do you anticipate muscle weakness?

I’ve learned over the years what triggers my MG the most, and it tends to be these things:

• Illness
• A change in medicine or introducing a new medicine
• Lack of sleep
• Heat

Illness

Illness isn’t something I can really plan for. I usually know it’s coming when I’ve been exposed to someone else who is sick, mainly my children. I try my best to rest, stay hydrated, and get quality sleep (especially naps) to hopefully prevent getting sick as much as possible.

I’ve found that even if I don’t actually get sick, when my body is fighting to get sick, symptoms still flare. It usually results in a more difficult time breathing, double vision, and some extremity weakness. Sometimes symptoms will last weeks after I’ve recovered, and the onset of illness or fighting something even if it never turns into sickness

Changes to medicines

I’ve learned from bad experiences that I have to be very cautious about changing my medication and/or introducing new medications. If I absolutely have to make a change, I do it very, very slowly or introduce the lowest dose I possibly can to see how I’ll react.

Lack of sleep

Lack of sleep is typically a symptom some people just can’t avoid. I do my best to listen to my body and rest, take frequent breaks, and try to get at least 8 hours a night. Although for me, I often need more like 9 to 10 hours.

I’ll call on my husband to offer his support with other things that need to get done around the house or to help with the kids, so I can rest as guilt-free as possible (when you’re a mom).

Heat

Last but not least, I try to avoid overheating as much as possible. I stay inside on really hot days or wear an ice vest if I have to go out. I also make sure to bring ice packs and always have an insulating cup with lots of ice when I do venture into warmer weather. If I have to be outside for long periods, I try to stay close to a body of water like a pool or a lake where I can just easily hop in.

What makes weakness worse?

If my symptoms have already been aggravated, the activities that make them worse or increase muscle weakness would be any form of exercise but especially strength and conditioning. For my swallowing weakness, eating chewy foods like steak or carne asada makes my muscles weaker.

Activities like driving, reading, watching TV, or playing on my phone all increase my eye weakness/double vision – anything that requires your eyes to focus, which is almost everything when they are open.

Also, talking, singing, laughing, etc. are all activities that would make my breathing worse when I’m going through a flare. Lastly, not getting quality sleep and not managing stress increase my symptoms on top of the activities above.

How do you recover?

Some of the ways I manage or recover from muscle weakness are by taking proactive measures now that I know my triggers. I make sure to get as much quality rest as I can, avoid heat or prepare for hot temperatures, and avoid being exposed to illnesses by loading up on vitamin C, staying hydrated, and resting when I can.

When a flare can’t be avoided, I practice self-care as much as possible. I’ve found that a combination of Western medicine (talking to my doctor about increasing medications when I’m flaring) and integrative medicine (chiropractic, acupuncture, proper nutrition, meditation, etc.) all help me recover faster than just one approach also.

In addition to practicing self-care, I also request help as much as I can so I’m able to focus on healing and recovering. Asking my husband, a friend, or a family member for extra support allows me to focus on just my health and not my responsibilities so I can also recover faster.

Sometimes that recovery can take days or even weeks though, so also practicing patience with myself and my body. That’s a huge one. Allowing myself the time and space I need to recover, regardless of how long that is, knowing that this too shall pass eventually.