15-17 June 2017.
Walking with McArdle's course,
2-9 August 2017.
AGSD-UK Annual Conference,
28-29 October 2017.
The human body is very complex and we are all different. However, some general points can be made and the following advice should be useful to the majority. This page is written by Andrew Wakelin, the AGSD Type V representative, who himself has McArdle disease.
There are two phases of pain experienced in McArdle disease. Firstly, the pain experienced on exercise. Secondly, the pain which can be experienced after damaging the muscle through execessive exercise and experiencing a fixed contracture (cramp).
During activity or exercise it is very necessary to experience the pain as this gives feedback about how the muscles are coping. The pain starts in a gentle way and gradually increases. It can be managed by lessening the level of exercise, for example by slowing down when walking. Or if the pain starts to build up quickly it is necessary to stop and rest until the pain eases off, then start again. If pain killing drugs are taken there is a significant danger that they will interfere with this vital feedback process, which could lead to excessive activity and damaging muscle cramps.
In the event of an activity being, or becoming, anaerobic and causing a muscle cramp there will be pain, possibly severe pain, for some hours or days thereafter. In these circumstances pain killing drugs would be effective and, once activity has finished, there is no concern about masking any feedback.
Tell your friends and colleagues
It is best to have the understanding of your family, friends and work colleagues. And, of course, they can't understand if you don't explain your condition to them. You may feel a bit awkward at first, but you will soon be able to explain in just a few sentences and you won't think anything of it.
You need to avoid doing anaerobic activity such as lifting or pushing heavy things. Some very ordinary activities are anaerobic - like standing on tiptoes to put something into a high cupboard. Do that for more than a few seconds and you can cause a muscle cramp. So get someone else to do these things for you! If you have explained your condition to friends in the past it is then much easier to ask for their help when the occasion arises.
Aerobic activity like walking is very good for you. But just a little too fast, up too much of a hill, or carrying a little too much, and the activity turns anaerobic and can cause you pain and muscle damage. If you are walking on your own it is easy to slow down or stop and rest to avoid damage. But if you are with friends or work colleagues who do not understand your McArdle disease, it is tempting to say nothing and keep pressing on. If they are in a rush you can end up in severe pain and holding them up anyway. So much better to have told them beforehand, then when you need a rest just say 'McArdle's' and stop. They will soon get so used to it that they won't even comment.
Explaining about your condition
When you tell someone about your McArdle's it is a good idea to describe it as a muscle condition rather than a muscle disease. That way they won't think that they are going to catch it. If you explain that it is a genetic condition they will understand that it is just bad luck that you got it at conception, rather than it being in any way down to anything you have done or not done.
If people want to know more you can explain that the main symptom is pain on exercise and in everyday activities, but that you can do pretty well if you go at you own pace and avoid things like lifting heavy objects and running. Say that if you overdo it you can get very painful muscle cramps which last for hours or days. If they are severe you can experience muscle breakdown with an associated risk of damage to the kidneys.
If they still want to know more, suggest that they read the McArdle's section of this web site.
In order to stay safe with your McArdle's you need to avoid situations which could put you in danger - either from a bad episode of rhabdomyolysis or from physical danger due to your muscles running out of energy. Some examples: don't swim in water that you cannot stand up in; rest before crossing a road in case you have to hurry; avoid situations where you might have to run away from danger; don't take a hotel room on the upper floors in case you have to use the stairs due to a fire alarm or fire drill.
Association for Glycogen Storage Disease (UK) LimitedRegistered Charity No 1132271