Posted by Nurse Linda in Life After Paralysis on April 13, 2022 # Health

Cloud with ZZZs indicating sleepingEveryone gets tired at times. It could be due to an exciting or stressful event. Rest or sleep will usually resolve your tiredness. There is a different type of tiredness that stays with you. This is fatigue. Fatigue can be expressed as overtired or weariness when you just cannot achieve a rested state. It may include low energy or may feel like being in a fog. A nap or even a good night’s sleep may not resolve fatigue.

Symptoms of fatigue include tiredness or sleepiness that is not overcome with resting, a lingering headache, dizziness, aches and pains, weakness, reflexes and/or slower responses, difficulty with decision making, and irritability. In addition, fatigue can lead to immune system dysfunction.

Individuals may have a few symptoms or many. The feeling of fatigue may be hard to describe as the symptoms vary and can be differing strengths. Some individuals have lived with fatigue for so long that they think of it as being normal.

There are several causes of fatigue that are just not lack of sleep. Some of the sources of fatigue are not even thought about but can impinge greatly on your life.

Physical causes for fatigue might include ongoing lack of sleep, the amount of energy required to do activities, and changes in your physical appearance. Hormonal changes affect fatigue. Self-care activities such as intermittent catheterization and turning at night can disrupt your sleep leading to fatigue.

Lack of exercise is a cause of fatigue that is easily overlooked with paralysis. It is critical for the nerves and muscles of your body to move. This is physiology. When nerves and muscles are not moving or being moved by someone, they react as they crave movement. You may not feel the twitch or muscle cramp that tells you to move or adjust, but your body will react with fatigue.

Tone (spasticity) is another source of fatigue as the tightening of your muscles does expend energy. You may see twitching or tone in your muscles or may not see tone if it is inside your body, but you are still using energy to support the activity.

Mental causes of fatigue might include issues that affect your mental health, such as worry, anxiety, stress, disappointment, and anger. Depression has a fatigue factor directly attached to it. Other fatigue-generating factors can include a feeling of loss of control and loneliness. Changes in physical appearance can affect your mental wellbeing.

Lifestyle changes, including family dynamics, your role in the family, ability to perform your job, hobbies that require changes in your ability to do them, and results of paralysis or disease can lead to fatigue. Restrictions of choices in activities due to physical changes, scheduling restrictions, or changes in the amount of time to do things are also causes.

Environmental causes can also lead to fatigue. When your body is being moved as in a wheelchair or vehicle, it is being disturbed by the movement of the machinery beneath you. Without paralysis, your body’s muscles will tense slightly to reduce the jarring motion. However, with paralysis, you may not be able to do this, so your body remains loose. The constant vibration can happen without your noticing, but your body will react with fatigue as if you have had an extreme workout. It is not enough to suffice as a workout but just enough to cause fatigue. I think of it as similar to jet lag on a slower scale, car lag.

Both internal temperature and external temperature affect fatigue. Fever or shivers speed the metabolism to cool or warm the body. Illness can lead to fatigue because your internal body is working so hard. External factors can affect your body as it reacts to being too hot or too cold even if you do not feel temperature alterations on your skin.

Often overlooked is humidity. Unlike temperatures, humidity accumulates in the body. It builds over time and is much slower in dissipating. The effects of humidity in the body lead to physical symptoms of tiredness and fatigue as the body drains energy.

There are actions that you can do to help reduce fatigue. The first is to think about if you might be having fatigue. Not everyone with paralysis does. Fatigue is one of those body processes that becomes a disruption over time. It usually does not appear suddenly, so it is very easy to overlook it, excuse it away, or just become accustomed to it as a part of your life. Some individuals feel fatigued with paralysis during adjustment. Others may develop fatigue or have a recurrence of fatigue years later. It is a slippery phenomenon.

Fatigue can be caused by medical issues, so the first step should be to discuss your symptoms with your healthcare professional. Some disease causes of fatigue are secondary complications of paralysis. Concussion and multiple sclerosis are two health issues that have a fatigue component. Depression has the symptom of fatigue. Treating depression will help you resolve your fatigue concern if that is the source. Diabetes is another disease that has a symptom of fatigue. Treating your diabetes will help with fatigue as well as other consequences of the disease. Grief over the loss of function can lead to fatigue. A mental health check-up can get you started on a path to dealing with loss.

There are many diseases that have fatigue as a symptom. Irritable bowel disease, anemia, arthritis, cancer, kidney disease, heart disease, disordered breathing, and sleep apnea are just a few. Fatigue may be the first sign of these diseases which are better treated when found early.

Review your medications with your health professional specifically to look for medications or combinations that affect sleep. Some medications such as cough syrups, antihistamines, medications for tone (spasticity), and antidepressants can make you feel fatigued even with good sleep.

In the meantime, there are actions that you can do to help yourself if you feel fatigued. Think about your sleeping schedule. Practice sleep hygiene which includes going to bed at the same time and rising at approximately the same time. The body likes routine for sleep. Do not use devices with screens a few hours before bed. Discuss your intermittent catheterization schedule to see if you can be a block of time for sleep. It probably will not be eight hours, but perhaps one catheterization in the night instead of two, all adjusted by timing. You absolutely must discuss this with your healthcare professional. Another issue is to review bed surfaces for pressure dispersion. You will still need to turn, but some equipment may be better for your needs than others.

Avoid alcohol, caffeine, and recreational drug use. These cause your body to speed up or slow down, affecting your sleep pattern.

Assess the amount of physical activity you practice. This can go two ways. Make sure you are getting the physical activity that your body requires, especially the parts of your body affected by paralysis. Your body is calling out for movement, even if you are not getting that message. On the other hand, some people work out to the maximum. Perhaps you are not getting the signal that you are pushing your body too hard. Either way, without movement or with too much movement, your body reacts to lack of activity or too much activity even if you do not sense it. Adjusting your activity up or dialing it back may help fatigue.

Watch what you eat. Your body needs nutrients to function at its best level. If you are not eating a balanced diet, you are not feeding your body as it needs for its best function. A missing nutrient can affect your body function leading to fatigue. Most individuals get all the nutrients needed from a well-balanced diet. Some individuals over-adjust through vitamin and supplement intake that is not needed but does affect body function. Check with your healthcare professional to ensure your diet and not over supplementing yourself.

Just as a reminder, the infection can affect your general health. Urinary tract infections, skin infections from pressure injury or cuts, and respiratory infections from a cold, flu, and COVID are all out there in the world. Fatigue can be a symptom of a health issue. Keep up your prevention techniques.

Pediatric Consideration:

Children are great at activities that they enjoy. Often, they do not want to stop playing fun activities. Helping a child learn to transition from one activity to another is a challenge for all parents.

Encouraging movement to all parts of your child’s body is an important life lesson. You can participate with your child as that helps them see the importance of exercise. However, as a parent or caregiver, you will need to help your child learn to slow down sometimes to avoid fatigue.

The mental well-being of children can be overlooked as they do not often express feelings of fatigue. They just accept things as they are. Be sure you are involved with a therapist that can help your child maintain strong mental health.

Linda Schultz is a leader, teacher, and provider of rehabilitation nursing for over 30 years. In fact, Nurse Linda worked closely with Christopher Reeve on his recovery and has been advocating for the Reeve Foundation ever since.

In our community, Nurse Linda is a blogger where she focuses on contributing functional advice, providing the "how-to" on integrating various healthcare improvements into daily life, and answering your specific questions. Read her blogs here.

And if you want more Nurse Linda, sign up for her monthly webinars here. Don’t worry, we archive her answers so you can refer back and sift through her advice. Consider it Nurse Linda on-demand!

The National Paralysis Resource Center website is supported by the Administration for Community Living (ACL), U.S. Department of Health and Human Services (HHS) as part of a financial assistance award totaling $8,700,000 with 100 percent funding by ACL/HHS. The contents are those of the author(s) and do not necessarily represent the official views of, nor an endorsement, by ACL/HHS, or the U.S. Government.