15-17 June 2017.
Walking with McArdle's course,
2-9 August 2017.
AGSD-UK Annual Conference,
28-29 October 2017.
These notes are intended to be of assistance to people with McArdle Disease who are at a low level of aerobic conditioning and need to get started on a regular exercise regime. They were prepared by Andrew Wakelin, the AGSD-UK Type 5 Coordinator.
Basis of suggestion
These are my suggestions drawn from my own experience, the experience of others with McArdle's and from listening to consultants and exercise specialists who work with McArdle's. I am not a doctor, but an experienced patient. My thanks go to three people with McArdle's who have recovered from extremely low levels of aerobic conditioning and who gave me very constructive suggestions.
Before you start
Ideally you would be seen by a consultant with expertise in McArdle's and would be given an exercise regime tailored to your particular state of fitness and any other personal factors. (In the UK everyone should be able to get a referral to the UK McArdle Clinic.) If you cannot get to see a suitable consultant, you may decide to use my guidelines at your own risk. Please remember to read the AGSD-UK legal disclaimer page. If you have any other medical conditions which might affect your exercise or put you at risk, you must talk this over with your doctor before starting your exercise programme.
Your objective is to build up your aerobic capacity whilst avoiding any anaerobic activity. (See our glossary for an explanation of these terms.) When you exercise aerobically your body gets better at transporting oxygenated blood and blood-borne fuels to your muscles. More mitochondria grow within the muscle cells and these make it easier for you to exercise. This is the same effect that athletes use when they train, but it is particularly beneficial to those of us with McArdle's.
You need to get into second wind and then exercise in that state for about 45 minutes, about 5 times per week. You need to build up gradually to that level. Depending on your current level of conditioning this may take several months.
Setting aside time
You need to set aside time to do this. It may be difficult due to work and family commitments, etc., but it has to be prioritised. I suggest you try to find a slot in the day when you can manage it and always do it in that slot - get into a routine. (I am lucky in that I have a treadmill at home and can use it whilst listening to a radio programme I like, so it gives me a set time. But also try listening to an MP3 player or watching TV to help pass the time.) Once you are up to the 45 minutes and it is going well, you may be able to relax the fixed slot routine and instead fit in at least some of the walking with other things that you do. Perhaps visiting a friend or relative, going to the shops, etc.
Logging your efforts
If you keep a simple log or diary of your efforts it will help you to see your progress and it will be an encouragement to keep going. We all need some motivation. The exercise will be easier as you go on. You can download an example log sheet here.
Where to walk
If you have a treadmill available that is ideal as you can control your speed and incline (initially only on the level). If you use a treadmill in a gym, you must make sure that you take control of your own exercise - never allow an enthusiastic assistant or trainer to set your speed or goals as they simply cannot understand about McArdle's. As experts they may insist that they know best, but do not give in. Don't compare yourself to others, and ignore their odd looks if you stop for a rest after just 2 minutes!
If you have no treadmill, find somewhere convenient that you can walk on the flat on a hard surface like a sidewalk or surfaced path. You can turn around and walk back and forth, so it could be as little as say 100 yards (although you might then need to explain to the neighbours that you haven't gone completely mad!). If you walk outside you may want to walk with a friend at times. If so, you MUST insist that you have to walk at YOUR pace and obey YOUR need for rests. You must NEVER feel obliged to accommodate them or their needs - walk to suit YOU.
Monitor your heart rate
A heart rate monitor is needed at the outset. Maybe you could borrow one for a few weeks from a friend or a gym. You only need a basic model and can purchase a strapless version (wristwatch style with no chest strap) for about 40 pounds sterling. You should check your heart rate frequently and not exceed a set beats per minute. You calculate this as the maximum heart rate of 220 less your age and then take 65% of that. So for example mine is (220-61)x0.65=103. However, this can only be a guide and you need to see how you feel.
The idea of this is to help make sure that you do not over stress your muscles - your heart rate will increase with muscle stress. You will eventually get used to the sensations and will know by the feel in your muscles when to slow down or stop for a short rest. When you are comfortable with that you will no longer need the heart rate monitor.
Before you start you need to be on a healthy, well balanced diet. The current thinking is that for McArdle's we need our diet to be slightly higher than normal in carbohydrates (using complex carbohydrates). This advice is based on research published in May 2008. The recommended diet consists of 20% fat, 15% protein and 65% carbohydrate (vegetables, fruits, pasta, rice, bread and low-fat cheese).
In the past a high protein diet was recommended. Some consultants still promote that and a small number of people find that suits them best. This disparity may just highlight that diet is actually less important to us than exercise.
Take care to drink sufficient water to remain fully hydrated, especially during exercise. Dehydration can be a factor in muscle breakdown.
Don't try to exercise when feeling unwell
If you are fighting a cold or 'flu, take a few days off from your exercise routine. It is believed that there is a greater risk of muscle breakdown in these circumstances.
Avoid anaerobic activity
People with McArdle's must always avoid anaerobic activity - this is high energy-demand activity such as lifting heavy weights, going steeply up hill, sprinting, squatting, etc. Whilst building up your aerobic capacity if you do any anaerobic activity and get a muscle cramp (fixed contracture) it will put back your training and be a disincentive. So take extra care as you build up your fitness.
Practice getting into second wind
First of all you need to practice getting into second wind, because exercise without second wind is likely to be damaging rather than beneficial. I must emphasise the need to get into second wind without experiencing any significant pain. You must NOT push through the pain, but keep juggling your effort to avoid the pain. If you feel tightness or pain stop for a rest, it should not take more than 30 seconds to a minute for you to feel OK to continue. If it takes longer than that you were probably going too fast.
Please now read our page about second wind for more details before continuing with this page.
If you are at a very low fitness threshold you must start very slowly, about 0.5mph (0.8kph). I believe it is more important to learn to respond to the sensations in your muscles than to slavishly follow a formula. However, if you remain pain free you can step the speed up every 2 minutes in increments of about 0.25mph (0.4kph). But always taking care to remain pain free, if necessary slow down again or even stop for a short rest.
Once you have improved your fitness, if you find a slow start to be frustrating you might try starting a bit quicker, but do not be tempted to start too quickly. If you press on too fast you may start up other energy pathways which can make it impossible to get into second wind. (It is a bit like taking the wrong turning at a fork in the road - you need to go all the way back to the fork and try again on the right track.) You have to stop completely for about 45 minutes, and try starting again but more slowly this time.
In McArdle's, no matter how fit we get the first minutes until getting into second wind are always an issue. You have to accept that.
There are several papers published on second wind in McArdle's. Here are two:
Don't overdo it
If you feel great after getting into second wind and exercising, don't be tempted to overdo it. You might then get cramps and it will put you off. Much better to keep to a steady build up of duration.
If you have aching muscles after exercise it would be sensible to have your plasma Creatine Kinase (CK) checked by your doctor. A guideline is to ensure that your CK never rises to more than double your normal background level (which is likely to be much higher than the reference range anyway). If necessary reduce your exercise for a while. If ever you have a fixed contracture in a muscle after walking, or feel unwell, you should seek the advice of your doctor. In the very unlikely event that you have myoglobinuria (dark coloured urine from muscle breakdown) you should seek emergency medical attention.
Good days and bad days
A lot of people with McArdle's report having "good days and bad days". They mean that on some days they find it very difficult to get going. The mechanisms behind this are not yet understood, although in some cases it may just be that they have been very inactive for a few hours and then have started off walking too fast and can't get into second wind (see above). Whatever the reasons, don't get frustrated and don't be put off by these days. Just leave it till the next day and the chances are that everything will be fine again.
Building up to the target duration
Depending on your current fitness you will need to build up to your target time. Start at maybe 10 minutes after second wind - so around 20 minutes total. If you cannot manage that just get to second wind at about 10 minutes and certainly don't do more than 20 minutes on the first day. The distance does not matter, just try to get to second wind plus a bit longer. Do this duration for a few days, then extend by 5 minutes and do a few days at that duration. If you have any problems, reduce again by 5 minutes and keep at that duration for a few days again, then add 5 minutes back on. Keep on in this way until you build up to the 45 minutes. This may take several months depending on how de-conditioned you were at the outset.
Don't think about adding any inclines (hills) into your routine until you can happily manage 45 minutes on the flat. Then gradually increase the steepness of inclines over a period of weeks. Always start a session on the flat and only introduce an incline after getting into second wind. You need to condition the slightly different muscles which are used to go uphill, and this will take time just as it did for your walking on the level.
Going for a real walk
When you are confident about your abilities you may want to start going for a real walk in the countryside, where your route dictates what you will face in terms of terrain and inclines. We have some notes to help you with this here. If you have been exercising on a treadmill rather than outside, remember that the surface may be more resistant (loose surfaces, mud, long grass, etc) and you cannot control the incline. Start by being extra careful about getting into second wind and make your first days out of shorter duration than you have been used to on the treadmill.
Keeping in shape
Once you're able to exercise to the full 45 minutes and maybe tackle some inclines, that is not the end of the road. It seems that those of us with McArdle's tend to lose our fitness more quickly than others, and the loss has a greater impact on us. If we lose a lot of conditioning we can have a hard time and experience repeated muscle injury, 'flu-like symptoms and visits to hospital. It is also difficult to get back to fitness. So it is important to keep up with your exercise on a regular basis, building it into your life as much as you can.
If you plan to use these notes to help you start an exercise programme, please get in touch to let us know. Feedback will help us to further improve these notes. Click here to start an email.
Share experiences with others who use this programme. There is a discussion topic within the McArdle Disease group on Facebook. Click here to have a look.
Last reviewed: 30 September 2010
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