How to exercise with mitochondrial disease

People living with mitochondrial disease often suffer from a wide range of symptoms that can drastically affect quality of life. So, is it safe to exercise with mitochondrial disease?

WHAT IS MITOCHONDRIAL DISEASE?

Mitochondrial Disease, or Mito as it is commonly referred to, is a rare genetic condition affecting the Mitochondria of 1 in 5000 Australians. Mitochondria are found in every cell in the body (with the exception of red blood cells) and produce greater than 90% of the energy needed for our bodies to survive. For this reason, mitochondria are often referred to as the powerhouse of the body. Mitochondrial Disease occurs when the bodies mitochondria become unable to produce energy properly, leading to cell death and organ system malfunction and/or failure (Mito Foundation).

WHAT ARE THE SYMPTOMS?

Because mitochondria are found in every cell, mitochondrial disease can essentially present with any symptoms, in any organ of the body. For this reason, it is notoriously difficult to diagnose. Many thousands of patients are misdiagnosed or remain undiagnosed for an extended period of time. Some of the most common presentations of Mitochondrial Disease include:

• Eyes: drooping eyelids or difficulty moving one’s eyes
• Brain: seizures, movement disorders, cognitive impairment, stroke, reduced balance, migraines
• Ears: hearing loss
• Heart: cardiomyopathy (an enlarged, but weak heart)
• Body: weakness, fatigue, pain
• Kidney: kidney failure
• Liver: liver failure
• Stomach/Bowel: reflux, vomiting, constipation, diarrhoea
• Pancreas: diabetes

Unfortunately, there is currently no cure for Mitochondrial Disease. Treatment and management plans are often varied dependent on the organs and body system impacted.  Mounting evidence is also showing that physical activity can play a key role in managing Mitochondrial Disease when used appropriately.

EXERCISE AND MITOCHONDRIAL DISEASE

Mitochondrial disease can cause many symptoms the most common being muscle weakness and fatigue.  For that reason, improving fatigue levels is often a key goal for people starting an exercise program. Other benefits of exercise include increased engagement and positive association with movement, improved physical function, more independence and a reduced risk of comorbidities. If you’re living with Mito, exercise is less about achieving “norm” parameters and more about improving areas of life where function is impacted or limited. The overall goal is often about achieving the best possible quality of life.

WHAT TYPE OF EXERCISE IS BEST?

The right exercise prescription can literally be like medicine for patients with Mitochondrial Disease. Under the guidance of an Accredited Exercise Physiologist (AEP), you will be provided with an individualised exercise program and learn more about energy management and pacing strategies. Research indicates there are lots of benefits of performing regular aerobic exercise for Mito patients, particularly with reduced functional capacity and deconditioning. It has shown to improve oxidative capacity (oxygen uptake rates) and energy levels by increasing the number of healthy mitochondria in your cells and keeping them functioning at their best.

Resistance based training has shown to decrease proportion of mutated mtDNA in addition to improve muscle strength and function with no adverse effects or damage to muscle properties.

TIPS FOR STAYING ON TRACK

When you feel the fatigue associated with Mitochondrial Disease, it can be difficult to imagine participating in exercise. That is why it is so important to work with an exercise professional that can assist you. An exercise program should consider:

• Your likes and dislikes
• The importance of starting ‘low and slow’ – it is better to be the tortoise than the hare!
• Set small, realistic goals
• Listen to your body and monitor your fatigue levels
• Stay hydrated
• Ensuring you don’t overdo it when you feel well
• Take breaks and stop if you feel excessive fatigue or illness

 

GUIDANCE FROM AN ACCREDITED EXERCISE PHYSIOLOGIST

Physical activity for people living with Mitochondrial Disease is a complex balance that usually takes some time to get right. For this reason, it’s wise to get some guidance from an Accredited Exercise Physiologist (AEP) before starting an exercise program.

An AEP will work with you to tailor a program that considers the presentation of your Mitochondrial Disease, as well as factors such as your health status, living and working situation, medications, and exercise preferences. As your fitness and symptoms change, they will be able to assist you to modify your program accordingly.

Written by the following members of the Australian Mitochondrial Disease Exercise Physiology Network:

Amanda Semaan: Amanda is an Accredited Exercise Physiologist and Co-Director of Active Ability.

Ashley Boniface: Ashley is an Accredited Exercise Physiologist at Bodytrack Exercise Physiology