“Activity is more difficult because of muscle weakness and the multiorgan involvement in this disease, including cardiomyopathy and restrictive lung disease,” says Clara Chow Haws, MD, a pediatric neurologist and the director of the Neuromuscular Medicine Fellowship Program at Phoenix Children’s Hospital. “This can compound the demands on energy.”
Many things can cause fatigue or make it worse, including pain or discomfort, disrupted sleep, side effects of treatment medication, and the stress and anxiety of dealing with a chronic disease.
A particular challenge for children and adults with DMD, many of whom use a wheelchair or other mobility aid, is always having to think about how to accomplish their day-to-day activities and develop solutions, says Lori Bohn, NP, a board-certified psychiatric mental health nurse practitioner and the medical director at Voyager Recovery Center in Lake Forest, California.
“This process of constant thinking will cause cognitive exhaustion,” Bohn says. “In addition to the mental aspect of being chronically exhausted, people suffer emotionally from adapting to losing function over time. This results in chronic stress, depression, and anxiety, and ultimately decreases overall energy and motivation for performing daily life tasks.”
But there are many ways to manage fatigue, conserve energy, and recharge. Here are seven strategies to try.
1. Take Rest Breaks
Bohn advises scheduling rest, rather than waiting until you feel tired to take a break. “Rest before becoming completely exhausted will allow you to conserve your energy and prevent burnout,” she says. “Instead of pushing through fatigue, incorporating planned breaks into your day can help stabilize your level of energy.”
Andrew Gorecki, DPT, a physical therapist in Traverse City, Michigan, and a cofounder of the remote therapeutic monitoring platform MovementRx, recommends that parents schedule rest breaks for their children every 30 or 45 minutes, and keep an eye on their energy levels. “Daily monitoring of activity can help families identify early signs of fatigue,” he says.
2. Optimize Exercise
“If muscles are not used, they will atrophy and weaken,” says Kaitlin Young Batley, MD, a pediatric neurologist and the director of the Muscular Dystrophy Association’s Care Center at Children’s Health in Dallas. “However, we want to avoid overexertion and putting excessive stress on muscles as well, so it can be a fine balance.”
It can be very helpful to work with a physical therapist knowledgeable about DMD, or a neuromuscular physician, to develop an exercise program. They can advise you on exercises that are suitable, safe, and beneficial for your individual needs.
“[High-intensity] activity and exercising to the point of exhaustion can worsen muscle breakdown,” says Dr. Chow Haws. “Gentle, low-impact, aerobic exercise such as swimming, walking, and stationary bicycling is recommended for patients with DMD.”
3. Improve Your Sleep Quality
Poor sleep quality and sleep disorders are common in DMD, which contributes to being tired during the day. “Sleep disruptions commonly occur either due to pain, breathing difficulties, or disrupted sleep patterns, which directly affect the amount of energy available during the daylight hours,” says Bohn.
Talk to your doctor if pain is keeping you up, or if you think you have a sleep disorder like apnea. You can get tested and treated. Other tips for getting better sleep:
- Consider assistive technology like customized mattresses, adjustable beds, accessories such as grab rails and voice-activated controls, and therapeutic pillow supports.
- Try to go to sleep and wake up at the same time every day to regulate your body’s clock.
- Have a relaxing bedtime routine to separate daytime and nighttime activities, like reading a book or listening to music.
- Get some exercise every day, as physical activity helps promote sleep.
- Consider a white noise machine or a fan to block distracting noise.
- Try relaxation techniques like mindfulness and meditation.
4. Take Advantage of Mobility Devices
A mobility device can significantly reduce fatigue and preserve energy. Depending on individual needs, there is a wide range to choose from, such as canes, walkers, scooters, and manual and power wheelchairs.
Mobility devices can reduce muscle strain and prevent falls while allowing more participation in daily activities. If you or your child doesn’t need one every day, they can be helpful for things like shopping excursions and field trips.
5. Prioritize Nutrition
You need a healthy diet to fuel your body. Nutritious foods can boost your energy levels and prevent and overcome fatigue. “While there is no substantial research regarding diets in DMD, it is recommended that patients follow a well-balanced diet and avoid weight loss, as this can contribute to muscle atrophy,” says Chow Haws.
Foods that should be part of your daily diet include:
- Protein sources, such as lean meat and poultry, fish, beans, and legumes, nuts and seeds
- Water- and fiber-rich foods, such as vegetables and fruit, which can help prevent constipation and kidney issues. Whole grains are also a good source of fiber.
- Foods rich in calcium and vitamin D, such as low-fat dairy, fatty fish, mushrooms (vitamin D), and some fortified foods.
- Low glycemic carbohydrates, which break down slowly and help maintain energy over the course of the day, such as nonstarchy vegetables, whole grains, nuts and legumes.
A registered dietitian can discuss healthy choices and help plan out meals.
6. Engage in Creative Activities
Recharging mentally is important, and creative pursuits can help. “Engaging in creative activities such as listening to music, creating artwork, telling stories, playing games, and so on, can assist in establishing a sense of self outside of the disease,” says Bohn.
What works will depend on you or your child’s individual interests, abilities, and age.
“Finding creative outlets and hobbies that allow individuals with DMD to remain active and connect with others in a way that minimizes any physical limitations can be so helpful,” says Dr. Batley. “I’ve seen patients thrive through creative expression. This includes mastering instruments like the cello, competing in wheelchair basketball, or participating in adaptive dance programs that celebrate movement in all its beautiful forms,” she says.
7. Nurture Social Connections
The physical limitations that come with DMD make it difficult to keep up with others during play, social activities, sports, and games. But strong relationships can improve quality of life and help provide emotional support.
“Even minimal social interactions and connections can serve as a buffer against loneliness or feeling isolated and aid in developing emotional strength,” says Chow Haws. “It is very important that patients with DMD remain engaged with their community and peers. This supports psychosocial well-being and a sense of purpose and belonging.”
She encourages the children she treats to participate in hobbies and activities. “Our patients all enjoy summer camps, such as the Muscular Dystrophy Association summer camp, where they can interact with other peers with disabilities and neuromuscular diseases,” she says.
How to Get Started
See which of these ideas appeal to you and give them a try. Take note of how your energy level changes.
The most important thing to keep in mind with DMD is that you need to work with you or your child’s care team when you make changes to your physical activity or diet. They can recommend ways to safely implement these strategies.
The Takeaway
- Conserving energy when you have DMD involves modifying daily activities, using adaptive devices, taking rest breaks, and recharging mentally.
- Mobility devices can significantly reduce fatigue and preserve energy, and allow for more participation in daily activities.
- Individuals with DMD may experience anxiety, depression, stress, and social isolation; strategies for recharging mentally can restore emotional balance and a sense of well-being.
- Strong relationships can improve your quality of life and give you emotional support.
Read the full article here
