Use it or Lose it

Health professionals advising myositis patients now encourage carefully tailored exercise. Early thinking advised against exercise, for fear of increased inflammation leading to weakness. Recent studies have shown that regular exercise may have an anti-inflammatory effect and can improve strength and daily function for myositis patients.

Since 1993 there have been several published studies which have reported beneficial effects from following a tailored exercise programme.

Studies in Sweden by Helene Alexanderson and Ingrid E. Lundberg have been particularly encouraging – see our Resources page which summarises the findings of those studies and concludes:

In 2016 Helene Alexanderson concluded “Current evidence supports the safety and efficacy of exercise to reduce impairments and activity limitations and to improve quality of life in patients with Idiopathic Inflammatory Myopathies; indeed, intensive exercise could even be considered an anti-inflammatory treatment in adult patients with polymyositis   and dermatomyositis,. Recent studies have demonstrated encouraging results for exercise, showing safety and improved function and quality of life also in patients with IMB and JDM. Exercise should be introduced for all patients with IIM individually adapted to disease activity, glucocorticoid dose and level of pain and fatigue. Exercise should be introduced at low loads and intensity under supervision of a trained physical therapist, and effects should be monitored by validated objective and patient -reported outcome measures. Further studies are needed to determine the optimal type of exercise regime in the different stages of the disease and different subgroups of IIMs.” Journal of Internal Medicine July 2016, Volume 280, Issue 1 pages 75-96.

The studies have revealed that the exercise programme should be tailored to each individual and progress very slowly. A mix of strength and stretching with at least 1 day rest per week has been suggested as an approach. Weak throat muscles can benefit from specific exercises suggested by a speech pathologist. Hand and finger exercises may benefit IBM patients and can be provided by hand therapists.

Australian research results authored by Liam Johnson, Dylan J. Edwards, Susan Walters, Gary W. Thickbroom and Frank L. Mastaglia, which are particularly focussed on the impact of exercise on IBM patients can also be found on our Resources page.

Videos of presentations about exercise and myositis given at the Annual Myositis Conferences in the USA  in 2015 and 2017 (including hand exercises for IBM patients) can be found on the website

Patients could consider consulting:

  • an exercise physiologist (
  • a physiotherapist with interest in neuromuscular conditions or rehabilitation
  • pilates instructor
  • speech therapist (for swallowing difficulties)
  • a doctor or trainor specialised in rehabilitation
  • a community based exercise programme but which is tailored to individuals
  • an individualised hydrotherapy programme
  • a tai chi instructor

*This information is not a substitute for medical advice. Consult your doctor before embarking on an exercise programme. Exercise during and after pregnancy can also be beneficial but an experienced exercise physiologist or physiotherapist with expertise in working with pregnant women should be consulted.

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