Amyotrophic lateral sclerosis (ALS) is a rare neurological disease that is caused by loss of motor neurons, which are nerve cells that are responsible for voluntary muscle movement.
While the symptoms and manifestation of ALS vary from person to person, most patients develop fatigue due to muscle weakness and spasticity. In patients with ALS, fatigue can range from mild weakness all the way to extreme exhaustion. Patients will generally complain about feeling tired, diminishing strength, and lack of energy. Fortunately, symptoms of fatigue can be minimized by effectively managing them.
Firstly, the patient has to recognize that they are experiencing fatigue, then understand which factors are causing the problem to worsen, learn how to conserve energy and effectively manage the condition. If followed, this can lead to an improvement in quality of life.
The first step is recognizing fatigue. The signs and symptoms of fatigue include:
- Slow body movement
- Slow speech responses (i.e. short answers)
- Low and dull voice
- Shortness of breath
- Diminished eating, sometimes leading to anorexia
- Irritable temperament
- Crying often
- Reduced smiling
- Inability to enjoy previously enjoyable experiences
- Not caring about previously important things
- Lack of effort in appearance and grooming
- Wanting to be alone
- Lack of interest in making plans
Factors that can worsen fatigue:
- Overexerting yourself
- Reduced quality of sleep
- Anorexia, malnutrition and excessive weight loss
- Lack of protein in diet
- Breathing Problems
- Stressful situations
- Feeling of hopelessness
- Extreme weather
- Certain medications
- Lack of helpful people when needed
- Financial problems
- Unsuitable home for mobility (i.e. if they house has too many steps between rooms)
Medications that stimulate the brain to reduce generalized fatigue can help ALS patients that are suffering from fatigue. These are following medications:
- Modafinil: modafinil induces nerve cells to release high levels of norephinerine and dopamine, which contribute to increased feelings of energy.
- Creatine: creatine increases the maximum amount of energy that is used for specific activities and has a positive effect on muscle strength and fatigue in general.
- Sleeping aids: as it is important to get enough sleep, doctors can prescribe sleeping aids for patients that are having trouble sleeping.
- Pain killers: pain killers, which include over the counter or prescription painkillers, can help treat muscle weakness.
Other therapies that can help fight fatigue include:
- Eat foods that increase levels of serotonin and melatonin
- Take calming herbs, such as valerian root
- Take Epsom salt baths, which help reduce pain and fatigue
Strategies for managing fatigue
An inability to properly manage fatigue can lead to unnecessary suffering, social isolation and rapid physical deterioration. Fortunately, there are effective management strategies that can help conserve energy and feel less fatigued.
- Make tasks easier: make use of strategies and assistive devices that make a difficult task easier. In this case, it is best to see an occupational therapist to determine what is best for your needs. For example, if you have trouble walking, then it is best to get a wheelchair. A motorized wheelchair is even better as it will spare you the effort of manually getting around in a standard model.
- Pace your activities: In order to save energy, it is best to move slowly, stop and rest often, and make sure to take a few breaths before you start again. If any task causes you to become breathless, then it is time to stop and relax.
- Plan for high-energy activities: it is best to schedule high-energy tasks when you know you will have more energy (such as in the morning). Planning out the activities is the best thing to do and gathering everything you need before you start will also help.
- Take shortcuts: there is no shame in making life easier by taking any shortcut possible. For example, don’t stand when you can sit. Use assistance in completing tasks if possible. Get a handicapped parking sticker so you don’t have to walk as far.
- Switch between activities and periods of rest: It is vital to schedule regular rest periods everyday day, multiple times during the day.
- Have a regular sleep schedule: It is important to sleep through the night in order to have more energy the next day. If you have problems waking up at night, then it is important to inform your physician so that the reason why it is happening (such as trouble breathing at night) can be figured out and fixed.
- Don’t take a long bath in warm water as that can worsen muscle fatigue.
- Try not to venture outside if there are extreme temperatures.
- Eat properly and consume the proper nutritional requirements each day in order to prevent unnecessary weight loss, which can worsen fatigue.
- Avoid stressful situations, particularly emotionally taxing situations, which can worsen feelings of fatigue.
- If you feel noticeably more fatigued after taking a certain medication, then it is important let the doctor know. Sometimes, medication can be substituted with another one that can have better effects.
- Make the living environment more accessible for daily activities, and promote energy conservation. For example, you can move a bed to another location or relocate personal items to make it easier.