Exercise advice for people with Mitochondrial Disease : University College London Hospitals NHS Foundation Trust

The following information has been written by the Specialist Physiotherapist who works for the Mitochondrial service. The page provides information about activity and exercise for people living with Mitochondrial disease. This information is for people seen at the Mitochondrial Clinic at the National Hospital for Neurology and Neurosurgery. Patients’ families or carer may also find this information helpful.

The importance of exercise for people with mitochondrial disease

Each person with Mitochondrial Disease will experience a different pattern of symptoms. Some people may feel more fatigued, some may have muscle weakness, and others may be limited to how much they can move or exercise. It is important for your general health and wellbeing to try to incorporate movement and activity into your daily routine wherever this is possible. Being less active causes muscles to become weak, which will affect your general health. This leaflet provides some ideas about how you may be able to increase activity. Your physiotherapist can provide more individualised advice as needed.

The benefits of keeping active

Exercise and activity are important for everyone. The less time spent sitting still, the better a person’s life expectancy and the smaller the chance of developing health problems such as heart disease, stroke, or diabetes. People with long term conditions, who have difficulty exercising can benefit from short bouts of increased activity. Reducing the time you sit if you can, as able taking more steps in the day or adding movement into your day can be as, if not more, helpful than going to the gym for a workout. Keeping active also helps to:

Prevent muscle weakness caused by inactivity.
Improve balance (reduce risk of falling).
Maintain muscle strength and independence.
Improve mood quality of life and fatigue.

Low intensity exercise, such as a slow walk or seated exercise can help your body to warm up before and recover after exercising; stretching after exercise is important.

When exercising:

You should work to a level where you take slightly deeper breaths and feel a bit warmer.
You should always be able to comfortably talk in a full sentence (or sing if you like singing).
Do not exercise to exhaustion.
You may feel some mild discomfort (e.g., a gentle muscle ache or stretch) during exercise. This is ok during the exercises, but it should settle quickly when you stop the exercise. You should not have lasting symptoms afterwards.
After you have been exercising for some time, you should feel as good as or better than you did before you exercised.
Muscle soreness after exercise should not last longer than 48 hours.
Pace your exercise in short bouts and increase the amount slowly so you don’t aggravate fatigue.

Try to aim to build up your activity and exercise gradually - working towards three times a week for 30 minutes each time. You could do three lots of five to 10 minutes instead of a full 30 minutes in one go. The priority is that you find some movement or activity that you can comfortably and consistently complete.

Stop exercising and contact the Physiotherapist or your GP if you experience:

muscle pain more than 48 hours after exercise
shortness of breath, palpitations, dizziness
or a change in symptoms during or after exercising.

Contact details

Clinical Specialist Physiotherapist Neuro-Muscular Diseases

The National Hospital for Neurology and Neurosurgery

Box 102

London

WC1N 3BG

Switchboard: 0845 155 5000 / 020 3456 7890 (There is no additional service charge for using a 0845 number. The cost is determined by your phone company’s charge).

Direct Line Telephone: 020 3448 8012

Email: uclh.enquiry.mitochondrialservice@nhs.net

Websites:

NHS - Mitochondrial Disease

UCLH - NHNN

UCL - Centre for Neuromuscular Disease

The Clinical Specialist Physiotherapist is available from 9.00am to 5.00pm Monday to Friday (excluding bank holidays). Answer phone messages will be responded to in two to three working days.