Managing Fatigue in Pompe Disease

Managing Fatigue in Pompe Disease

Pompe disease is a rare, progressive genetic disorder characterized by the abnormal buildup of a type of sugar called glycogen within the cells. Muscle weakness and fatigue are among the common symptoms of late-onset Pompe disease which can affect daily activities and overall quality of life.

Here are some tips to manage fatigue if you have been diagnosed with Pompe disease.

Assess the extent of fatigue

Assess how much fatigue you are experiencing using a fatigue severity scale (FSS). The FSS is a nine-point questionnaire rated on a scale of 1 to 7 which helps differentiate fatigue from clinical depression as they both have common features. A mean score above 5 indicates severe fatigue and requires clinical attention.

Eat well and often

Diet plays an important role in not only combating fatigue but also in the overall management of Pompe disease. You may need to modify the food you eat so that it is easier to swallow. A low-carbohydrate high-protein diet, along with the use of amino acids such as alanine, helps provide good nutritional supplementation. Make sure you eat often for constant energy supply, but do not overeat. Also, talk to your doctor first before taking any supplement.

Exercise regularly

Light to moderate exercise can help in losing weight, managing stress, and beating fatigue. Since the risk of injury is high for patients with Pompe disease, consult a physiotherapist or occupational therapist to find out safe exercises to do and for how long. A physiotherapist will also be able to teach good posture to conserve energy.

Pace your work appropriately

Pace your work so that you don’t experience fatigue. If you are working, talk to your human resources department and explain your symptoms. Make sure you are able to work at a comfortable pace and divide your overall target into shorter, easily achievable goals to ensure you don’t get overstressed.

Ensure adequate sleep

Not getting enough sleep is one of the common causes of fatigue. While most people require about eight hours of sleep per night, Pompe disease patients may require slightly more sleep. Make sure you are able to get the sleep you need. If working late-night shifts, ensure adequate rest prior to your shift and talk to your supervisor to see if your schedule can be relaxed for your needs.

Keep hydrated

Dehydration can also cause fatigue. Make sure you drink adequate quantities of water at regular intervals. You should also avoid alcohol and caffeine as much as possible. Cut caffeine consumption gradually to avoid withdrawal symptoms.

 

Last updated: Nov. 25, 2019

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