5 Tips for Maintaining a Fitness Routine With Chronic Fatigue Syndrome

Feeling tired every now and then is normal, especially if you haven't been getting enough sleep or aren't eating a balanced diet. But people with chronic fatigue syndrome have extreme tiredness that doesn't improve with rest. So, instead of actually giving you more energy, exercise may make your fatigue even worse.

"One of the problems with just using the term 'chronic fatigue' is that it makes it sound like people are just tired and that they just need to push through and exercise and they'll improve," says Nathan Holladay, MD, PhD, a Utah-based internal medicine physician who specializes in chronic fatigue syndrome. "When actually, in some cases, exercise could be very harmful."

That's why Dr. Holladay and other health care professionals prefer the term myalgic encephalomyelitis/chronic fatigue syndrome or ME/CFS. And exercise can still be healthy for people living with the condition — as long as they follow a few simple tips.

Myalgic encephalomyelitis/chronic fatigue syndrome is a complicated illness that's mainly characterized by severe fatigue, which can last for at least six months. For example, some people with ME/CFS may find that the simple act of vacuuming a room can be debilitating, Dr. Holladay says.

Approximately 836,000 to 2.5 million Americans live with ME/CFS, and about 90 percent of them don't know they have it, according to the Centers for Disease Control and Prevention (CDC).

In addition to severe fatigue, common symptoms of ME/CFS include difficulty thinking, sleep problems, a recurring sore throat, headaches and dizziness, according to the CDC. Some people with ME/CFS may also experience muscle pain and weakness, tender lymph nodes, digestive issues and sensitivity to light and sound.

If you're chronically tired, you might be thinking that you have ME/CFS, but because this complex condition shares many similar symptoms with other health conditions, it's important to see a doctor to get an official diagnosis.

In the past, doctors diagnosed ME/CFS by assessing a person's symptoms and ruling out other illnesses. Today, preliminary research — namely, an April 2019 study in the ‌Proceedings of the National Academy of Sciences‌ and a February 2020 report in the ‌International Journal of Molecular Sciences‌ — suggests there may be biological markers for the disease, which could lead to diagnostic tests in the future.

"One of the key features of ME/CFS is what we call post-exertional malaise (PEM)," Dr. Holladay says. "That usually means when people with ME/CFS overdo it, they 'crash,' or in other words, their symptoms get worse the next day or over the next several days."

Some of the early signs of crashing are increased brain fog, fatigue, pain and sensitivity to light and sound. "Sometimes if patients pay attention to early signs of crashing, they can lie down and avoid making themselves worse, but they don't necessarily always have warning signs that will tell them before they've gone too far," Dr. Holladay explains.

That's why it's so important for people with ME/CFS to learn their own boundaries and work with a doctor who can help them develop goals based on their specific needs and limitations.

"Although people with ME/CFS have notable limitations, there is a huge range of severity in illness," Dr. Holladay explains. "People at the better end may be able to work part-time or even full-time, albeit with limitations. On the other end, a patient may be so ill that they cannot leave their bed and must be isolated from excessive light, interactions with other people, etc."

Working out with ME/CFS is a delicate balance of doing the appropriate kind of exercise and doing it only when you're feeling healthy enough.

"Those who are severely ill may not be able to safely do any regular exercise," Dr. Holladay says.

If you're able to be active and you get the green light from your doctor, following a routine can help you reap some of the benefits of exercise, such as improved mood and better sleep.

Follow these expert-recommended tips to help you manage ME/CFS and stay active while reducing the risk of overexerting yourself.

Dr. Holladay recommends pacing yourself and gradually incorporating workouts into your schedule, such as three times a week. You can even start by just taking care of some basic household chores.

Pacing allows people with ME/CFS to figure out their individual mental and physical limits, according to the CDC. By staying within these limits, it can help them avoid PEM and crashing.

Pace yourself in two main areas: exertion and position. "Mental or physical exertion may contribute to crashing, but so does the position [you] are in. Spending too much time standing or even sitting upright can contribute to crashing," Dr. Holladay says. "On the other hand, just lying down all the time may make it even harder to tolerate being upright."

When you're doing any physical activity, it's best to alternate between doable chunks of activity and rest, Dr. Holladay says. For instance, you can do household chores in increments, like 15 to 30 minutes, and rest or recline in between these segments.

"You can get up, get dressed and eat some breakfast and then sit or recline for a while, then get up and take your dog for a short walk and recline again. Then, you can put laundry in the washer and sit down again, rather than trying to do all of these things at the same time," Dr. Holladay says.

When it comes to actually working out, the best type of exercise for people with ME/CFS depends on the person, Dr. Holladay says.

Low-impact exercises, such as walking, yoga, stretching, light strength training and Pilates are good options to consider.

People with ME/CFS tend to do better when they exercise while in a seated or recumbent (leaning back) position. "By sitting or reclining, they are reducing the strain from reduced blood flow so that their bodies can better tolerate limited exercise," Dr. Holladay explains.

For some people with ME/CFS, he recommends starting an exercise routine with stationary pedals or a recumbent bike, depending on what the person can tolerate.

Pedaling for five minutes with no or low resistance on a recumbent bike could be a good starting point. If you want to incorporate your upper body, he suggests lifting some light weights, such as 1- or 2-pound dumbbells, and doing only one set of just a few reps.

If you purchase a set of stationary pedals, you could sit on a chair or even lie on the floor while pedaling. "I generally prefer the stationary pedals or recumbent bike to a regular upright stationary bicycle because the regular bicycle puts them in a more upright position," Dr. Holladay says, and staying upright for long periods can lead to crashing.

Listening to music while you work out is an effective way to boost the enjoyment factor. "An upbeat rhythm increases endurance," says Liesel Gillies, MD, a family physician based in Calgary, Alberta, Canada who specializes in caring for patients with complex conditions, such as ME/CFS.

Many people with ME/CFS may find it hard to concentrate on a certain task; music can increase your dopamine levels, which in turn improves focus and motivation, she explains. And as a result, your levels of the stress-related hormone cortisol will also decrease. "This will improve sleep, which will improve fatigue, appetite and eating well," Dr. Gillies says.

"In exhausted patients, I find it helps a lot to initially focus on adequate protein, fiber and plenty of vegetables and fruits, as well as targeted supplementation — mainly to crowd out the eating of exhaustion-triggering food choices that are pro-inflammatory — and make the chronic inflammation in ME/CFS patients worse," Dr. Gillies says.

She explains that people with ME/CFS often eat packaged foods, which are more convenient but usually less healthy, and the lack of nutrition makes matters worse. "The poor nutrition will result in reduced muscle repair as well as affect mood and greatly reduce energy," she says.

It can be hard to stay positive with a disease like ME/CFS, but being more present in your workouts can help you shift your focus away from negative thoughts.

For example, Dr. Gillies suggests taking note of your surroundings. "Focus on breathing the fresh air, enjoying the daylight, looking at the plants or birds or the clouds or children or dogs playing."

Acknowledging you're doing enough will also help in boosting your motivation and clearing some positive headspace. Practice affirmations, such as "I am so proud of myself that I am walking today, even if I only walk for 5 minutes."

The goal is to do what you can when you can — without any guilt about not being able to do more.

"Experimenting with lifestyle changes and applying that knowledge is what lifts patients out of their deep, dark places, and practicing it daily eventually increases their confidence in their ability to improve or control their disease state somewhat," Dr. Gillies says.

Ultimately, you should listen to your body and never ignore its limits. By practicing these healthy lifestyle changes, you're on the right track to better fitness and overall health.

‌Ready to be more mindful in your workouts? The quick, beginner-friendly meditation below takes less than 3 minutes.‌