Tips for Managing Fatigue with Myasthenia Gravis
By Jean McCaslin, RN IgCN Clinical Nurse Educator - July 1, 2024

Living with myasthenia gravis (MG) can be challenging. One of the most verbalized frustrations other than the visible symptoms (eyes, physical strength, respiratory) is fatigue. In summertime, we as a society tend to enjoy the great outdoors in locations of physical beauty. There are picnics and beach or lake outings which oftentimes require long walks; sometimes in hot or humid conditions. Pre-MG diagnosis things like swimming, BBQ foods, and imbibing alcoholic beverages in the sun might have been part of a person’s routine. These things often taken for granted might be difficult due to MG-related fatigue.

In this blog I discuss some modifications to lifestyle that might assist MG sufferers to enjoy their social activities while conserving energy in day-to-day routines. Quality of life is vital in all our lives. Living with a chronic illness need not be “all or nothing”; making educated lifestyle choices help many living with MG lead more fulfilling and less exhausting or isolated lives.

General Tips:

One size does not fit all: Modifications should be considered based on many factors including symptoms and severity, environment, activity, treatments prescribed, home environment, and available assistance, to name a few.

Consider the day: In MG patients energy levels, strength, and specific symptoms vary not only day to day but for some, hour to hour. Energy-sparing planning can be very effective when patients make note of the times of relative stability versus instability, strength and fatigue and/or weakness.

Plan ahead: Having a plan for each day’s activities is extremely helpful. For most patients, upon waking, patients feel best and should consider their most physically taxing activities shortly after waking in patients with acetylcholine receptor antibody positive MG, acetylcholine at the neuromuscular junctions, which are ravished by this disorder, get used up by physical activity. Frequent rest-periods allow acetylcholine to replenish, making patients less fatigued.

Be consistent: Taking medications as prescribed is critical. Timing medications to coordinate with planned activities can be very effective when possible. sleep and rest-interval consistency.

Sleep and rest: Set a consistent bedtime in a comfortable space limited to distractions. Consistent sleep patterns and intervals of rest as needed based on assessment can help plan for energy-sapping activities. Caffeinated and alcoholic beverages should be avoided as well as blue-screen devices. Midday naps and/or just resting are encouraged. We have discussed tips for good sleep-hygiene in a previous post.

Be prepared to pivot: Despite efforts to get a good night’s sleep and to employ fatigue-sparing modalities, success is not guaranteed. If necessary, cancel non-essential engagements, and reschedule the day to a time when energy has been restored.

Maintain a healthy weight: A healthy weight is helpful for everyone, but in MG obesity increases energy needs and can worsen fatigue. Prednisone, a steroid medication commonly used to treat MG, can cause increased appetite and weight gain.

Activities in general: Break into small parts rather than complete all at once in order to conserve energy stores. Prepare materials/supplies ahead and keep items within reach prior to starting any activity. Have patients avoid multiple trips by keeping lists, particularly when long walking distances or stairs are involved.

Safety: Recognizing attributes and deficit helps to make smart choices when conducting any activity in a safe manner. Avoiding certain activities while weak is important for their overall safety. Playing to strengths is helpful to maintain dignity and confidence while remaining safe in ADLs.

ADLs:

Eating: Difficulty swallowing (dysphagia) is common in MG and can vary in severity. This can lead to significant nutritional deficits and/or choking. The act of chewing is exhausting for many, so complete food-avoidance is exercised by some. Nutrition is critical for energy, so when nutritional needs are not met fatigue is made worse.

• Nutritional supplements as needed (vitamin and liquid nutrition supplements)
• To ensure calorie needs are met, eat 5-6 small meals throughout the day rather than big meals, which can cause muscles to tire during chewing and swallowing.
• Diet should consist of high-protein, green leafy (low gas-producing) vegetables, and grains/carbs in order to meet energy needs.
• Plan meals and snacks after naps when swallowing and chewing is less difficult.
• Use a thickening agent (like “Thick-it”) as needed for dysphagia in order to promote hydration and decrease choking hazard.
• Consume soft, chopped or pureed foods to reduce the amount of energy needed to chew and swallow.
• Avoid hot liquids that can potentially relax the throat muscles.
• If you are on anticholinesterase medication (e.g., Mestinon®), take it 30-45 minutes before mealtime, to maximize the strength of the mouth and throat muscles.

Grooming: Bathing, oral care, getting dressed and hair combing can lead to exhaustion for an MG patient.

• Have all grooming supplies close at hand.
• Single task completion followed by a rest period, and always best after sleep.
• Sitting rather than stand when possible. Use a shower chair.
• Position mirror on a table and keep elbows on table or counter/sink to shave, brush hair or teeth.
• Avoid hair tools like blow dryers, curling irons, or flat irons.
• Suggest hairstyles that are low maintenance (perms, straightening, shorter cuts)
• Use grab bars, walkers, or other ambulation assist devices to maintain safety.

Ambulation: It is important to conserve energy and maintain gait-stability, particularly while rising to stand and walking. Tips include:

• Ambulation-assist aids, as needed.
• Frequent rest periods.
• Assess leg strength and respiratory stability before standing or walking.
• Consider a wheelchair or scooter for mobilizing long distances and when experiencing more energy-challenging days.
• Consider temporary relocation of sleeping quarters during periods of MG instability.
• Utilize handicapped parking.
• Locate closest entrances while in a car before entry to buildings or meeting places.
• Investigate handicap accessibility options prior to committing to events so appropriate modifications may be pre-planned.

Coordination of efforts: A team effort is always helpful.

• Discuss fatigue concerns with all members of the health care team (medical and personal team).
• Engage physical therapists with questions about energy conservation as well as diaphragmatic exercises when respiratory muscles are affected. Targeting conditioning of muscle groups is often very effective.
• Report fatigue, medication wearing-off effects and weakness concerns to MG-treating physician.

Mitigate heat-related symptoms: MG fatigue symptoms can be exacerbated by being in the sun.

• Avoid being outdoors during the hottest part of the day (11-3 PM) in summer.
• Wear loose, lightweight clothing when outdoors in summer.
• Bring plenty of hydrating oral liquids on outings.
• Have a cooler handy with ice packs or cool rags to place on neck or forehead if feeling overheated.
• When possible, stay in an air-conditioned environment on days or times when outdoor temperatures.

Utilize technology: When experiencing significant fatigue, leaving the home for work, to socialize or attend appointments can be challenging.

• Consider remote work opportunities when available. Some employers offer a mixed office and home workplace.
• Ask about virtual physician visits when fatigue-concerns are at play.
• Consider virtual family “get-togethers” to promote inclusiveness when fatigue might otherwise have patients miss out on gatherings.
• Online shopping and food delivery may be helpful. Laundry services may also be arranged online or by phone.

Break it down and ask for help: Having assistance to plan for potential low-energy or extreme fatigue days is crucial.

• Develop plans, engage significant others, friends and family when able.
• Break down tasks into energy-conserving parts to be done in order of importance during intervals when energy-levels and strength are highest.
• When a caregiver is available, food preparation and household chores may be delegated.

Nurses play an important role in the lives of an MG patients’ life. Patient education and care coordination can make a huge impact on energy conservation. These factors can allow greater inclusion and enjoyment for our patients navigating intermittent fatigue symptoms.