I imagine any myasthenia gravis (MG) patient would describe fatigue as a constant or intermittent part of their disease, yet fatigue is often described in relation to muscle weakness in terms of MG symptoms. Fatigue is not included in the Myasthenia Gravis Activities of Daily Living, (MG-ADLs), but since it is such a common symptom it should be part of disease management and patients should know it’s a normal experience.
Recent research demonstrates that fatigue can worsen the quality of life in people with MG, regardless of muscle weakness. As a patient, it can be difficult to describe what fatigue feels like and how it relates to MG symptoms specifically. If there were more ways to assess fatigue in MG patients, that could help providers and patients communicate how fatigue and muscle weakness are separate and also linked in MG disease expression.
Weakness and fatigue can also be extremely variable among patients, and fatigue can be unpredictable and sudden throughout the day. It can be very frustrating as a patient trying to manage what I want and need to get done compared to how much energy I actually have. Patients need to know this frustration is normal because fatigue is common.
Because MG affects muscle function, simple actions like walking, chewing, speaking, breathing, lifting arms, etc. can all be very challenging. Doing these actions also causes general fatigue, and muscles become quickly fatigued the more they are used. That is typical for the disease. Yet, examining muscle fatigue as a lens for the lived experience of MG can’t describe on its own the general loss of stamina and energy patients experience in their everyday lives.
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I have respiratory weakness and rely on a bilevel positive airway pressure (BiPAP) ventilator every day. I also have generalized weakness and experience fatigue all of the time. My BiPAP helps my fatigue level so that my body isn’t working so hard all of the time to breathe on its own. I spend much of my time resting throughout the day, and I use my BiPAP during rest time. It would be useful to be able to explain that in terms of fatigue and its effect on the rest of my day. Resting throughout the day and carefully planning tasks are how I manage fatigue and pace myself.
I have noticed in my discussions during appointments with my neuromuscular specialist that we go over the MG-ADLs at each appointment, but conversations about fatigue and how my muscle weakness is affecting my constant fatigue are not always part of those discussions. For example, my leg muscles have the strength to walk and stand again after the years I was in a wheelchair, but the distance I can walk is still very short because I quickly run out of energy and have to rest. Even just walking around my house in short bursts requires rest before and after.
More research about fatigue in MG patients would make that more clear about how to differentiate between stamina and weakness. Discussions about fatigue should be an important part of MG assessment and management, and more research is needed to describe how fatigue affects patients’ daily life.
Patients need to hear that fatigue is normal, so they understand how important rest and pacing are to managing their condition. It’s essential patients learn how to be aware of their fatigue levels so they can navigate the unpredictability of the disease and find a way to live the best life they can.