Apart from medication, exercise plays a very important part in the treatment of JDM patients. Muscle pain and fatigue are common symptoms in JDM. Exercise plays an essential role in reducing these symptoms as well as promoting recovery while being of general benefit to the child’s wellbeing.
Children should be assessed by a specialist physiotherapist who will examine your child to ascertain muscle strength and function. They will be given an exercise program designed specifically for them. During active disease, the aim of treatment should be to maintain muscle length, movement and function, and to minimize atrophy (muscle wasting). As disease control is gained by medication, the focus will change to increasing muscle strength and improving muscle endurance. The type of exercises given will be specific to each patient’s needs and exercises should be increased in difficulty regularly, at least once a week. This is done by increasing the number of times (repetitions) and the strength (resistance) used to do them.
Sport should be limited during times of active or more severe disease as the muscles will not protect the joints effectively and injuries may occur. However when the disease is well controlled and the muscles have regained their strength then sport can be encouraged again. It is important to take things at a steady pace to gradually increase exercise tolerance when returning to exercise.
A mother of a child with JDM has highlighted the importance of exercise in the article below :
“As with the majority of JDM patients at the height of his illness Patrick’s mobility was severely affected and he could barely walk. However, during our stay in GOSH the importance of regular exercise was drummed into us and we tried to keep Patrick as active as possible – one of his favourite games was trying to scare away the pigeons at the park by waving his legs in his buggy as I ran around pushing him. Luckily as Patrick got better his was able to take part in sporting activities both in and out of school.
Since last summer Patrick has been rowing for his school which involves training three times a week, I have to say he is enormously proud of his “six pack”! Keeping active and exercising regularly has brought tremendous results over the last 10 years, starting from being able to walk again and then climb stairs again through to reaching near perfect fitness today. Obviously, with JDM, the worry that the disease could return is often in our thoughts but knowing that Patrick is keeping as fit as possible helps us all to stay positive”.
