Ricardo Roda, MD, PhD, is the director of the Johns Hopkins Myasthenia Gravis Center in Baltimore.
Myasthenia gravis (MG) makes muscles feel weak and tire out fast. That weakness can affect muscles throughout the body, from the eyes and face to the neck and limbs. But the condition is also tied to an ongoing general sense of fatigue that experts are still trying to understand.
Still, when you’re living with MG, you can take small, important steps to manage fatigue and use your energy efficiently. We spoke with Ricardo Roda, MD, PhD, about the risk of pushing through fatigue, lifestyle changes to make, and the importance of accepting support from loved ones.
Q: How do your patients describe the fatigue that MG causes?
Roda: There are two issues with fatigue in myasthenia gravis patients. One is related to their weakness: There are some muscle groups that are typically weak because of the disease itself.
And sometimes, patients will also describe this pervasive fatigue that they have that's totally unrelated to their underlying weakness. So you can have a patient that initially has weakness in all these muscle groups, and we use one of the many drugs we have to treat it. And the patient gets better. When you test them in the clinic, they're full-strength. Yet they describe this pervasive sense of fatigability that is just constant. It's independent of their skeletal strength. And that can be actually more disabling to the patients than the actual weakness.
Q: Once you start treatment for MG, do the muscle fatigue and general fatigue tend to become less severe over time?
Roda: We're actually pretty good at this point about treating the skeletal muscle weakness. That's something that we have a lot of medications to treat. It can be, in some patients that are refractory patients, kind of hard and difficult to treat. But I think for the most part, most patients will achieve some sort of respectable amount of response to treatment.
This other issue — let's call it central fatigue or this persistent fatigue — there's not much that we can do about that. Partly it's because I don't think we fully understand it. We know that some things are more associated with it. Like, for example, we know that if you had a mood disorder before you developed the disease, you're more likely to have this persistent fatigue. So there's like a central process that's happening here.
Q: In terms of muscle weakness, let’s say you have eye muscle fatigue, for example. What can you do to help manage it?
Roda: Anything that gives you rest can make a difference. With the eyes it's a bit hard because we need to see. But you could close your eyes when possible. Also make sure that you have a good eye prescription and that your monitors are at the right distance if you're using them for work.
Q: Same advice for other muscle groups affected by MG?
Roda: For the skeletal muscles in particular, it is. But the muscles that control your chewing or your swallowing, there's no way you can rest them, right? Because you use them when you eat. So this applies mostly to the skeletal muscles and a little bit with the ptosis, the eye droopiness.
Q: What do you tell patients who try to push through the fatigue rather than rest?
Roda: That's something that comes up all the time, and I advise them against doing that. This is a game of efficiency. So the way to think about it is you have a fuel tank And how much gas do you have in it at the beginning of the day? If you don't have myasthenia, you may have a full tank. But if you have myasthenia, maybe it's half or less than that. So you need to be careful how you spend your energy.
I usually have for patients a two-on-two rule or a two-on-one rule: Basically, do something that you need to do for a couple hours. Then they'll know if they need a two-hour rest or an hour rest, and after resting they can restart the activity they were doing. That's something that they have to work out themselves: what's appropriate and what's not.
Pushing through is really not advisable. I think pushing through makes things worse. Patients can end up being very fatigued and it can basically kill your day. So if you push really hard in the morning for three, four hours and then you spend the rest of the afternoon and the evening kind of out of it because you're so tired, then you're really not using your energy efficiently. But if you rest a lot in between, you do better.
Q: Along with resting as needed, can other lifestyle changes ease persistent fatigue?
Roda: I think that if your disease is stable and you have good strength, exercise is very advisable. It does a number of things to your body, like it increases your body mass, it increases the number of mitochondria in your muscle cells. And all those things are really good for you. They increase your stamina. So light cardiac exercise is good as long as you have a limit and your disease is stable.
The other thing that comes up a lot is the issue of temperature. If you're in a very hot place, you'll do worse. That's common of all autoimmune disorders, not just myasthenia gravis.
Some of the medications that we use to treat the disease itself can be a problem. Sleep, for example, is super important; getting good rest at night is so important. But there are drugs like prednisone that are widely used that can actually give you insomnia and can affect your sleep and can make you gain weight and cause sleep apnea.
Q: Does managing stress play a role in how serious fatigue becomes?
Roda: Yes. It's well known that stress can make your myasthenia symptoms worse. So low-stress environments are also very helpful.
Q: Is there anything that you wish more people with the condition or caregivers knew?
Roda: I think that the vast majority of the patients I see with myasthenia gravis that do well usually have a caregiver — either a partner, a family member, a friend — who looks after them a little bit. I think having that support network is extremely important to their health and well-being.
But what's not talked about and what I do see a lot is that those caregivers usually also run the risk of having a lot of stress related to this. And so support not just for the patient but also for the people caring for them is very, very important. They bear a lot of the load.
A lot of the support networks for patients with myasthenia gravis are really important. The Myasthenia Gravis Foundation of America is an excellent advocacy organization for these patients, and they do provide support networks for them as well.
The patients that ultimately end up doing the best with this disease are the ones who take full ownership of the disease. They're very active in their care. And you can clearly see that they stay on top of things.
