The Importance of Physical Activity

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Exercise Promotes Recovery & Healing

Most children and adolescents need at least 60 minutes of physical activity a day. Although the symptoms of dysautonomia can pose a tremendous challenge for patients, physicians very strongly encourage daily physical activity and exercise (check with your physician regarding specific recommendations for your individual case).  Typically physicians recommend that patients aim for an estimated 30-60 minutes of strengthening, exercise and conditioning day.  Often an individualized physicial therapy program is recommended to help guide and support severely impacted patients.  Chronic illness counseling can also be very helpful with learning coping techniques and developing a healty mindset.

 

Why is it important for dysautonomia patients to stay as active as possible?

The human body was designed for physical activity and movement. Humans were not designed to be sedentary beings. Thus, any medical condition or situation that interferes with physical activity poses extra hardships for our bodies.

Exercise, physical activity, and mobility all contribute to positive health and well- being and are especially important for individuals diagnosed with forms of dysautonomia. Lack of exercise, lack of physical action, and immobility all contribute to negative health and will definitely prevent, delay and hamper the recovery process for dysautonomia patients.

Disuse Syndrome is the generic name for a physical state caused by bed rest, immobility and/or a lack of physical activity.There are both local and systemic symptoms associated:

  • Muscles, Joints, Bones:
    After only a short time of inactivity, the muscles shrivel and stiffen. The medical term for this is Muscle Atrophy.

    Muscle mass is lost with inactivity and then the ability to utilize muscles for everyday tasks becomes difficult due to the resulting muscle weakness. Muscle weakness can also make one more susceptible to injury.

    Bed rest, immobility and/or lack of physical activity causes a loss of protein and muscle deterioration.

    Physical activity helps build and maintain healthy bone density, muscle strength, joint mobility, and circulation. Thus, physical activity it is even more important to patients diagnosed with Joint Hypermobility Syndrome (JHS), a benign form of Ehlers Danlos Syndrome (EDS) that commonly presents with dysautonomia patients.

    By moving the muscles, ligaments and limbs, we bring them oxygen and enhance their flexibility, strength and endurance. Physical activity gets everything moving - blood, oxygen, nutrients, cellular respiration, and the nervous system.

  • Cardiovascular:
    The most vital purpose served by our heart and blood vessels is the transport of oxygen and antibodies. The efficiency of the heart decreases with inactivity because the heart is a muscle similar to any other muscle in the body.

  • Blood Components:
    With prolonged bed rest and lack of physical activity/movement, the amount of red blood cells declines which decreases the amount of oxygen being delivered to the tissues. Blood clots and inflammation increase.

  • Hormones:
    Physical exercise and activity increases insulin's ability to work by increasing the number of insulin binding sites on muscle cells. The function of insulin binding to glucose provides vital energy for our cells to perform their proper function. A lack of exercise promptly leads to a reduced response to hormones.

  • Regulatory Functions:
    With inactivity, body temperature falls and normal day/night rhythms are disrupted. Normal control mechanisms for hormone release break down. Exercise has been shown to help improve our body’s natural circadian rhythms. This can help maintain a healthy sleep pattern.

  • Sensory Deprivation:
    Significant and progressive disorientation occurs when patients are deprived of visual and auditory stimulation. Bed rest results in a decreased sensitivity of vision, hearing and taste.

  • Nervous System:
    Physical inactivity results in decreased activity of the nervous system, (which is vital to many daily functions).

  • Immune System:
    Moderate physical activity is linked to a positive immune system response. The increase in blood flow associated with moderate physical activity helps to more quickly circulate antibodies and white blood cells that fight infection. Moderate exercise repeated on a regular basis has a cumulative effect that leads to a long-term immune response.

  • Genitourinary System:
    Both the kidneys and the bladder degenerate and lose vitality as a result of physical inactivity.

  • Gastrointestinal System:
    Prolonged bed rest and lack of physical activity can slow down the gastrointestinal tract, alter digestion, alter the utilization of nutrients, alter protein metabolism, and disturb appetite.

    Exercise can increase intestinal tone, and can greatly improve digestion, elimination, and appetite.

  • Emotional State:
    There is a saying, “The cure for life is life.” The less we engage ourselves in life (physically and mentally), the less energy we will have to engage. Exercise and physical activity will stimulate the production of chemical substances produced by the body that make you feel happy (an increased feeling of well being, vitality, and alertness).

  • Obesity:
    Physical activity has been shown to be the single most important factor in successful weight maintenance. Childhood and adolescent obesity is a serious health problem. Childhood and adolescent obesity can lead to earlier onset of diabetes, high blood pressure and high cholesterol.

    Several factors have been implicated in the development of obesity in children and adolescents, but the primary reasons include increase in snacking patterns of high fat sweets and salty foods (chips, crackers, candy), and a lack of physical activity.

    Although most children with dysautonomia are encouraged to snack often on high salt foods, we must recognize that the eating patterns that are developed during childhood may also influence future food choices as adults. Thus, it is important to balance our need for higher salt intake with healthy eating habits and adequate nutrition. When children adopt unhealthy patterns of physical activity, they may be likely to carry these behaviors over to adulthood.

 

But I can barely get out of bed – how can I exercise?

Many patients find the idea of exercising extremely intimidating.  You don’t have to run a marathon to get yourself started on a bootcamping regimen. Take small and simple steps to start. Begin with a short walk, some leg lifts, pedaling on a recumbent bike – whatever you can do. Then challenge yourself with longer sessions. Recognize that it is going to be very hard and very challenging but that it is absolutely necessary for obtaining an improved quality of life and any degree of recovery.

The importance of staying physically active is one of the hardest but most vital lessons successful dysautonomia patients learn on their road to recovery. Taking forward steps towards recovery requires that dysautonomia patients persevere and make every attempt to do exactly what their body doesn’t want them to do. It is medically documented: to obtain recovery (or any degree of recovery), they absolutely must get moving.

Patients will often get worse before they get better when beginning therapy. Some may feel like it is absolutely impossible to exercise, move, sit up etc. Some days will be easier than others. Most days will be quite difficult at the beginning. The key is to not give up and to not give in. Most patients say that once they get through the initial intense phase of beginning a program they slowly start to be able to handle more and more activity. With time, setbacks become less severe and the rebound effect becomes more rapid and longer lasting. 

 

Exercise promotes recovery

Please recognize that in order to avoid additional medical complications, it is extremely important to prevent Disuse Syndrome in dysautonomia patients. Exercise, physical activity, and motion are all essential “prescriptions” for patients.

Energy creates energy for the dysautonomia patient. Call it exercise, reconditioning, conditioning, or physical activity – the point is that patients have to bring movement into their daily regimen in order to improve or recover.

Always obtain authorization from your treating physician before beginning any strengthening or exercise program.

Join the DYNA Youth Ambassador Program and bootcamp for recovery with quality friends!  Friends who have been there before are more than happy to cheer you on!

 

Recommended Materials

Resources:
Basic Strengthening Exercises for previously bedridden patients to start with(PDF)

Video:
23 and 1/2 hours: What is the single best thing we can do for our health? from Dr. Mike Evans