Following on from the Moving Mountains conference, I have given some more thought to exercise and sickle cell. I discussed this briefly in a previous blog – Lifestyle Choices and Sickle Cell Disease 10/06/2014, but I think it is worth returning to again in more detail, because exercise is such an important factor in maintaining good health. Patients with sickle cell disease are often advised against exercise, because “it is too dangerous with your condition” and are they are thereby denied the powerful health benefits that can accrue from regular exercise. This is unfair and unnecessary. Part of the reason for this blog is to emphasise that anyone, no matter what their health situation, can incorporate exercise into their lifestyle, provided they think carefully about how to do it beforehand. Firstly, I will discuss the general benefits of regular exercise and the particular improvements to expect if you have sickle cell, some of which are surprising and unexpected, and then what exercise to do, how to do it and how to remain safe whilst you exercise.
So to begin, what are the general benefits to be expected from a regular exercise programme? Many of these positive benefits are well known, but the figures are worth quoting because they are so dramatic. Long term benefits include, a 30% reduction in deaths from any cause, a 40% decrease in the risk of heart disease and a 50% reduction in the risk of developing high blood pressure. Strokes, dementia and depression are also reduced by 30%, osteoporosis, or thinning and weakening of the bones which predisposes to fractures, by 40% and diabetes and osteoarthritis by 50%. Even the risks of getting some common forms of cancer are reduced by exercise – breast cancer down 25% and bowel cancer down 45%. The benefits of exercise often outweigh the potential benefits of many of the drugs we have available and, what’s more, exercise comes with a minimal risk of any side effects. There is no reason, just because you have sickle cell disease, that you should be denied the extraordinary improvements in long term health that regular exercise brings.
What about benefits which might be particularly important to someone with sickle cell disease? I think that these fall into four main categories:
1. Chronic pain. Many people with sickle cell disease complain of chronic pain, as discussed in previous blogs – Chronic Pain Conference 14/12/2014 and 17/12/2014. This is a debilitating, frustrating and difficult to manage condition. Regular exercise is at least as good as any other intervention available and will improve the situation in some 25-50% of patients. Worth a try at least.
2. Fewer crises and more rapid recovery. Like many chronic conditions sickle cell is characterised by repeated episodes of ill health or crises. Many crises are provoked by simple viral infections, a cold or the flu. By activating and improving the function of your immune system, regular exercise reduces the number of viral illness you will get and would therefore be expected to reduce the number of crises that you experience as well.
A painful crisis is an energy-sapping experience, which often leaves patients tired and exhausted and, as a result, full recovery from a crisis is often a slow and protracted process. Whats more, the older you get the longer it takes. Regular exercise, by improving your general fitness levels, means that recovery times are much shorter. You are able to bounce back faster allowing a quick return to normal life. This is known as the “buffering” effect of exercise – buffering or protecting you against the full effects of an acute illness and speeding up recovery times.
An additional, unexpected, advantage is that your ability to exercise can act as a barometer of your general health. A sudden reduction in exercise capacity will give you an early warning of an impending crisis allowing you to put into place all those measures we talk about which can sometimes avert a crisis; good hydration, warmth, rest and relaxation, increasing the chances that they will work.
3. Psychological health. Like many other people with chronic illnesses, if you have sickle cell you are much more likely to develop a range of psychological problems, which cumulatively can make life very miserable and make coping with sickle cell much more difficult. This psychological burden includes; a low mood or depression, feeling lonely and isolated, being vulnerable and dependent on others for help and support, feeling inadequate with a low self esteem. Although we all feel like this from time to time chronic illness is characterised by the frequency and intensity of these problems. These psychological states of mind are all, without exception, improved by exercise, which also has a positive impact on sleep patterns. Poor sleep is a common complaint among those with sickle cell and often makes these psychological problems worse. Improving your sleep means that you will wake more refreshed each morning with increased energy levels.
4. Compliance. Finally, and unexpectedly, others have found that regular exercise often results in improved compliance with all your other everyday medications. Daily folic acid and penicillin and other medications, such as hydroxycarbamide, which many find very difficult to take on a regular basis, suddenly become more easy to accept. Why this should happen is not clear. It may be related to improved psychological well being or possibly that achieving one set of goals, exercising regularly, makes it easier to stick with other forms of treatment. Whatever the explanation taking medication regularly means that it is much more likely to work successfully.
Why is it that exercise has such a powerful positive effect on our health? There are almost certainly many reasons. It improves the strength and health of the heart, reduces cholesterol levels in the blood and lowers blood pressure. It increases muscle strength and stamina, improves balance and co-ordination and strengthens the bones. Of particular importance in sickle cell, exercise improves lung function by making you breathe more deeply, opening up the small airways, it causes the blood vessels to expand, improving blood flow and thereby reduces the risk of blood vessel obstruction or vaso-occlusion, which will provoke a crisis and finally exercise causes the brain to release chemicals, called endorphins, into the blood stream, which improve psychological well-being and also act as powerful natural pain killers. Better than taking tablets.
It is clear that regular exercise provides dramatic health benefits both generally and specifically for those with sickle cell disease. In practical terms how can you go about incorporating exercise into your every day life. And it is very important that exercise does become part of your daily routine, not something you do only when and if you feel like it. There are many barriers, or excuses, to regular exercise which we all use; no time, no facilities, don’t like getting out of breath or sweaty, too tired, other things to do, and so on. Think about what your own particular barriers are, name and shame them, then it will be easier to find ways around them.
What sort of exercise should you be doing to gain the most benefits. Well the short answer is anything that gets you moving is better than nothing. In fact, those who exercise the least stand to gain the most from beginning to be active. All of us, no matter what our initial fitness levels, will benefit from a regular exercise programme. The standard medical advice is that optimal exercise should include at least 150 minutes per week, that’s five 30 minute sessions, of aerobic exercise and 2-3 sessions of resistance exercise weekly. This should be what you aim to build up to, but it is very important to start slowly and gradually build up your exercise regime.
Everyone will be different but, for example, you might start by walking for just 5 minutes twice a day, gradually increasing the time of your walks by 5 minutes each week, so that at the end of a five week period you are walking for 30 minutes twice a day, or 420 minutes a week, well above the recommended 150 minutes a week. At the same time, it is important to gradually increase the intensity of the exercise, starting from a gentle stroll and building up to a brisk walk, sufficient to get you out of breath, gradually increasing the distance walked over the five week training period. This is just one idea and it is important to personalise your exercise programme. Why not devise your own programme and set your own goals – it doesn’t matter at how minimal a level you start, just get going and gradually build things up.
Aerobic exercise is anything that gets you out of breath such as brisk walking, climbing the stairs, jogging, gardening, housework, dancing etc. It is important that the aerobic exercise you choose is something that you enjoy doing, it will then be more likely to fit easily into your life. Resistance, or strength training, improves muscle strength and tone and generally means lifting weights or exercising against some resistance. Many people would go to a gym for this but you don’t have too, press-ups on the floor at home or lifting bags of sugar would both do the trick. Whatever you choose to do, the secret is to keep it going on a regular basis. Although cardiovascular fitness improves quickly, many of the other health benefits only begin to build up after several months – so don’t be put off, be patient and persevere.
If you have sickle cell there are some particular issues to be careful about so that you can exercise safely.
These are the golden rules for safe exercise in sickle cell
1. Always stay well hydrated – the usual recommendation is three litres of fluid every day. Exercise increases fluid loss, so it is important to drink plenty of water at frequent intervals when exercising. Don’t wait until the end of the exercise period, take a bottle with you and drink as you go along.
2. Always stay warm – avoid exposure to sudden changes in temperature, either during exercise, when you may become too hot, but particularly on stopping, when it is easy to get chilled – there is a wide selection of exercise clothes to wear these days – invest in some that makes you feel good and wear several layers so that it is easy to put on or take off layers depending on temperature.
3. Don’t get too tired – start slowly with low to medium intensity exercise, initially in short sessions with rest periods in between. As your fitness improves you can increase the length of the sessions and the intensity of the exercise. If you feel “completely wiped out” the next day, you are doing too much. Cut back on what you are trying to do and slow down the rate at which you are increasing the intensity of your training.
4. Don’t exercise through pain – if you develop pain of any sort, sickle cell bone pain or any other pain, you must stop, rest and take some extra fluids. If the pain goes then you can re-start, but again work at a lower intensity level and slow down the rate at which you increase the intensity.
5. Always exercise within your capacity. This is the key rule. There are several ways you can tell if you have got the level of exercise right for you. All exercise will make you out of breath, that’s one of the effects of exercise which is beneficial, but you should still be able to talk despite this, if you cannot talk you are exercising at too high an intensity. Other warning signs, which indicate you are doing too much include, feeling sick or vomiting or feeling dizzy. The secret is to listen to your body and always to exercise within those limits. Set your own pace, don’t be led by others.
If you want to be more scientific about it you can use your pulse or heart rate as a guide. When you are resting this will be about 90-100 beats a minute. This is faster than someone without sickle cell, because your heart compensates for your anaemia, which is part of the condition, by beating more rapidly. The optimal heart rate during exercise is between 120-160 beats a minute. Whilst you are exercising you can check your heart rate by counting your pulse at the wrist and make sure that it is within these limits. If it is more than 160 beats per minute then you need to stop, reduce the intensity of your exercise and only increase it again provided your maximum pulse rate stays within these limits.
Some people with sickle cell disease have particular issues which may make exercise problematic for them. These include severe anaemia, damaged joints and complications affecting the lungs, including pulmonary hypertension, or high blood pressure in the lungs. If you have any of these problems it is probably best to talk to your consultant before you begin an exercise programme to get specific advice about what is possible for you.
Why no make a positive decision today to include regular exercise as part of your life. Be inspired by others who also struggle with long term, chronic illness. Check out the Beat Your Demons web site at http://www.beatyourdemons.org and overcome adversity with achievement.
Post-script: A paper from France, published in the British Journal of Haematology this week (BJH, volume 168, number 5, page 747; Oxidative stress is decreased in physically active sickle cell SAD mice by E Charrin, E Aufradet, A Douillard et al.) makes the point that mice, which have been genetically engineered so that they have sickle cell disease and who are voluntarily active on a running wheel every day over an eight week period, show reduced levels of oxidative stress, increased synthesis of nitric oxide and a reduced rate of haemolysis (the speed at which the red blood cells are broken down) These exercise induced biochemical changes will improve blood flow and reduce the risks of vaso-occlusion and therefore would be expected to have a positive effect on crisis frequency.