Benefits of exercise
- Improve aerobic conditioning (physical activity endurance).
- Improve efficiency in getting into the second wind.
- Prevent muscle weakness due to inactivity.
- Control weight.
- Improve mood.
The second wind
The second wind is the initial period of intolerance to physical activity or a daily task, leading to a short period of increased heart rate and perceived muscular pain.
The second wind takes approximately six to ten minutes to achieve. During this initial period of physical activity or exercise, you may experience muscle pain in your arms and legs. It is important to monitor this pain and slow down if you experience pain that is moderate to strong (4 out of 10 on the rating of perceived pain scale), before continuing your exercise.
The second wind is unique to people with McArdle Disease and is improved with regular physical activity.
Learning to achieve the second wind is very important to manage McArdle Disease. If you have difficulty with this, then supervised sessions with your physiotherapist may be required.
General exercise advice
- Aerobic exercise is light to moderate physical activity is the best type of exercise for people with McArdle Disease. This will not lead to muscle damage if paced correctly. Examples of aerobic exercise are walking, cycling, swimming, using a cross-trainer/rowing machine/arm ergometer etc.
- Start off slowly to warm up gently to achieve the second wind.
- If you experience pain that is moderate to strong (4 on the rating of perceived pain scale), slow down or stop and rest for 30 seconds until the pain starts to subside (1-3 out of 10 on your rating of perceived pain scale).
- When in your second wind, exercising at a moderate intensity is safe. You should still be able to talk while exercising.
- Starting at 15 – 20 minutes of moderate intensity initially is acceptable, before trying to slowly build this duration. Aim to exercise for 30 – 40 minutes, three to five times per week, but remember to build this up over several weeks. Discuss this with your physiotherapist if you are unsure on what is best for you.
- There is emerging evidence that strength training may be beneficial for people with McArdle disease. This may be undertaken with resistance bands and light weights. However, this should only be done under the guidance of a physiotherapist experienced in treating people with McArdle disease.
- Activities to avoid include; sustained positions such as squatting, hold objects for short periods, stretching (e.g., yoga) and more vigorous exercise such as rushing up stairs.
Warning signs to look out for
- Changes in the colour of your urine (becoming darker coloured like coca cola or dark tea).
- Increased feelings of fatigue or exhaustion.
Contact details
If you have any questions about exercise, please contact:
Specialist Neuromuscular Physiotherapist – McArdle Disease
Tel: 020 3448 8034
Switchboard: 0845 155 5000 (there is no additional service charge for using an 0845 number. The cost is determined by your phone company’s access charge) .
Fax: 020 3448 3633
Email: enquiry.
Website: www.
Address:
Centre for Neuromuscular Diseases
8-11 Queen Square
London
WC1N 3BG
The Association for Glycogen Storage Disease (www.agsd.org.uk) has very useful information on exercise on its website.
