It is now increasingly recognized that exercise is an important component during the early phases of sIBM. Generally speaking, exercise should focus on muscle groups that are not yet involved (muscles that are still strong). Great care must be used because overexercising diseased muscles will increase weakness. Patients often report "overdoing it" and feeling an increase in weakness with little or no subsequent recovery. One neurologist told me "run a marathon and get a wheelchair."
A sample of MAJOR articles from the medical literature.
PubMed LinkCurr Opin Rheumatol. 2009 Mar;21(2):158-63.
Current Rheumatology Reports 2005, 7: 115-124.
Exercise: An Inportant Component of Treatment in the Idiopathic Inflammatory Myopathies.
Alexanderson H. See pdf here.
Curr Opin Rheumatol. 2005 Mar;17(2):164-71.
The role of exercise in the rehabilitation of idiopathic inflammatory myopathies.
Alexanderson H, Lundberg IE.
Department of Physical Therapy, Rheumatology Unit, Karolinska University Hospital, Solna, Stockholm, Sweden, and bRheumatology Unit, Department of Medicine, Karolinska University Hospital, Solna, Karolinska Institutet, Stockholm, Sweden.
PURPOSE OF REVIEW: The objective of this review is to provide an update on
exercise and clinical assessment in the idiopathic inflammatory myopathies.
RECENT FINDINGS: Polymyositis, dermatomyositis and inclusion body myositis are rare conditions with muscle weakness as a common prominent feature. Earlier, these patients were discouraged from active exercise due to a fear of increased muscle inflammation with recommendations to rest, perform range of motion exercises and in some cases, isometric exercises. However, beginning in the 1990s, studies reported reduced disability in patients with chronic polymyositis/dermatomyositis following resistive mild/moderate to intensive muscular training and aerobic endurance training, without signs of increased muscle inflammation. Patients with active, recent onset disease seem to benefit from mild/moderate muscular exercise without signs of increased muscle inflammation. There is no evidence of increased muscle inflammation following exercise in inclusion body myositis. However the beneficial effects are unclear as one study report increased muscle strength, while the other could not achieve impairment reduction.
SUMMARY: Studies evaluating active exercise in IIM support the notion of safety and benefits. However, large multi-center studies are needed to fully establish the safety and benefits of different types of exercise. Data indicate that active exercise, adapted to disease activity and disability should be included in the rehabilitation of patients in all stages of IIM. The newly developed and validated outcome measures for patients with polymyositis and dermatomyositis help assess the effects of interventions on disease activity and disability in clinical trials and in clinical practice. However, there are no sensitive and valid outcome measure for patients with inclusion body myositis.
Rheumatology (Oxford). 2004 Jan;43(1):49-54. Epub 2003 Jul 16.
International consensus outcome measures for patients with idiopathic inflammatory myopathies. Development and initial validation of myositis activity and damage indices in patients with adult onset disease.
Isenberg DA, Allen E, Farewell V, Ehrenstein MR, Hanna MG, Lundberg IE, Oddis C, Pilkington C, Plotz P, Scott D, Vencovsky J, Cooper R, Rider L, Miller F; International Myositis and Clinical Studies Group (IMACS).
Center for Rheumatology, Department of Medicine, The Middlesex Hospital, University College London, London, UK. email@example.com
OBJECTIVE: To devise new tools to assess activity and damage in patients with
idiopathic myopathies (IIM).
METHODS: An international multidisciplinary consensus effort to standardize the conduct and reporting of the myositis clinical trials has been established. Two tools, known as the myositis intention to treat index (MITAX) and the myositis disease activity assessment visual analogue scale (MYOACT), have been developed to capture activity in patients with IIM. In addition, the myositis damage index (MDI) has been devised to assess the extent and severity of damage developing in different organs and systems. These measures have been reviewed by the myositis experts participating in the International Myositis Assessment and Clinical Studies (IMACS) group and have been found to have good face validity and to be comprehensive. The instruments were assessed in two real patient exercises involving patients with adult dermatomyositis and inclusion body myositis.
RESULTS: The reliability of MITAX, MYOACT and MDI, measured by the intraclass correlation coefficient among the physicians, and the inter-rater reliability, as assessed by variation in the physicians' rating of patients, was fair to good for most aspects of the tools. Reliability and inter-rater agreement improved at the second exercise after the participants had completed additional training.
CONCLUSIONS: The MITAX, MYOACT and MDI tools, which are now undergoing validity testing, should enhance the consistency, comprehensiveness and reliability of disease activity and damage assessment in patients with myositis.
Physical activity and disablement in the idiopathic inflammatory myopathies.
Rehabilitation Medicine Department, National Institute of Health, Bethesda, MD 20892, USA. firstname.lastname@example.org
PURPOSE OF REVIEW: The sequelae associated with idiopathic inflammatory myopathy
(IIM) often result in disability and decreased quality of life. Our understanding
of how exercise mitigates disability may be facilitated through the use of a
conceptual model. This review describes the enablement-disablement model applied
to myositis and explores the role of physical activity in the enablement process.
RECENT FINDINGS: National and international organizations have revised their
disablement models by acknowledging disability as a relational concept, refining
the relationship of disability to quality of life, and incorporating the role
of intervention through the enablement process. Disability associated with IIM
may be complicated by aging-related comorbidities and decreased physical activity.
However, data indicate that both short-term and long-term aerobic training results
in improved aerobic capacity and decreased disability in adults with IIM. Strengthening
regimens have also resulted in decreased functional limitations and disability
for adults with polymyositis and dermatomyositis. While comprehensive exercise
programs have not been shown to exacerbate disease activity or damage in people
with IIM, their effectiveness for individuals with inclusion body myositis (IBM)
SUMMARY: Physical activity constitutes a valuable enablement strategy that can reduce disability in adults with IIM. Use of the disablement-enablement model and ICF taxonomy in conjunction with outcomes across disablement domains may augment further investigation of the effectiveness of exercise interventions. Additional research is needed to better understand the relationship between disease severity and optimal exercise dosage, the effects of long-term exercise in children with IIM, and the physiologic response to exercise in people with IBM.
Clin Rehabil. 2003 Feb;17(1):83-7.
The effect of physical exercise following acute disease exacerbation in patients with dermato/polymyositis.
Varju C, Petho E, Kutas R, Czirjak L.
Department of Physical Medicine and Rehabilitation, General Hospital of Szigetvar, Szigetvar, Hungary.
OBJECTIVE: To study the effect of physical exercise shortly after an acute
episode of dermato/polymyositis (DM/PM).
DESIGN: Pilot study of a descriptive nature.
SETTING: Rehabilitation unit of a large general hospital.
SUBJECTS: Ten patients 2-3 weeks after an acute phase of DM/PM (early recovery group) and 11 patients in the inactive stage of DM/PM for at least three months (chronic stage group). INTERVENTIONS: Isotonic muscle training consisted of several series of different repeated movements at 65-70% of individual maximal repetition limit. Special training was applied for the respiratory muscles. Relaxing baths, mud packs and massages were also applied.
OUTCOME MEASURES: Dynamometer and spirometer were used for measuring the changes in muscle strength and respiratory function. Disability tests were done before and after therapy.
RESULTS: No disease relapses or decreases in muscle function were seen. In the early recovery group, the average muscle strength improvement was 17 +/- 31 % (p > 0.05) in the proximal muscles and 37 +/- 23% (p < 0.05) in the distal muscles, while the vital capacity also increased by 17 +/- 21% (p < 0.05). In the chronic stage group the average improvement in muscle strength was 46 +/- 34% (p < 0.05) in the proximal muscles and 37 +/- 29% (p < 0.05) in the distal muscles. By the end of the therapy both groups showed improvements in disability tests (p < 0.05).
CONCLUSIONS: Physical training started 2-3 weeks following an acute exacerbation of the disease seems to be useful and safe. Some improvement in muscle strength and respiratory function can be obtained, muscle atrophy due to inactivity may be partially prevented and the level of disability can be decreased.
J Rehabil Med. 2003 Jan;35(1):31-5.
Sporadic inclusion body myositis: pilot study on the effects of a home exercise program on muscle function, histopathology and inflammatory reaction.
Arnardottir S, Alexanderson H, Lundberg IE, Borg K.
Department of Clinical Neuroscience Division of Neurology, Karolinska Hospital, SE-171 76 Stockholm, Sweden. email@example.com
OBJECTIVE: To evaluate the safety and effect of a home training program on
muscle function in 7 patients with sporadic inclusion body myositis. DESIGN:
The patients performed exercise 5 days a week over a 12-week period.
METHODS: Safety was assessed by clinical examination, repeated muscle biopsies and serum levels of creatine kinase. Muscle strength was evaluated by clinical examination, dynamic dynamometer and by a functional index in myositis.
RESULTS: Strength was not significantly improved after the exercise, however none of the patients deteriorated concerning muscle function. The histopathology was unchanged and there were no signs of increased muscle inflammation or of expression of cytokines and adhesion molecules in the muscle biopsies. Creatine kinase levels were unchanged. A significant decrease was found in the areas that were positively stained for EN-4 (a marker for endothelial cells) in the muscle biopsies after training.
CONCLUSION: The home exercise program was considered as not harmful to the muscles regarding muscle inflammation and function. Exercise may prevent loss of muscle strength due to disease and/or inactivity.
Curr Rheumatol Rep. 2001 Aug;3(4):317-24.
The benefits and limitations of a physical training program in patients with inflammatory myositis.
Lawson Mahowald M.
Minneapolis VA Medical Center, Rheumatology Office (111R), One Veterans Drive, Minneapolis, MN 55417, USA. Mahow001@umn.edu
The clinical features of inflammatory myositis are determined by the severity
and extent of muscle weakness and systemic manifestations. The benefits and
limitations of physical training programs and rehabilitation strategies depend
on the clinical phase of the disease and analysis of underlying impairments
responsible for functional limitations in the patient. Patients with early stage
disease and severe weakness will be treated differently than patients who have
responded to medication and are improving. Not all patients will respond to
medications; their therapy programs will have different requirements. This article
reviews available data on the physiologic responses to exercise in patients
with inflammatory muscle diseases. New data support more aggressive approaches
to progressive strengthening exercises for patients with inflammatory myositis.
Muscle Nerve. 1997 Oct;20(10):1242-8.
Safety and efficacy of strength training in patients with sporadic inclusion body myositis.
Spector SA, Lemmer JT, Koffman BM, Fleisher TA, Feuerstein IM, Hurley BF, Dalakas MC.
Neuromuscular Diseases Section, NINDS, National Institutes of Health, Bethesda, MD 20892, USA.
We studied the effects of a 12-week progressive resistance strength training
program in weakened muscles of 5 patients with sporadic inclusion body myositis
(IBM). Strength was evaluated with Medical Research Council (MRC) scale ratings
and quantitative isometric and dynamic tests. Changes in serum creatine kinase
(CK), lymphocyte subpopulations, muscle size (determined by magnetic resonance
imaging), and histology in repeated muscle biopsies were examined before and
after training. After 12 weeks, the values of repetition maximum improved in
the least weakened muscles, 25-120% from baseline. This dynamic effect was not
captured by MRC or isometric muscle strength measurements. Serum CK, B cells,
T-cell subsets, and NK cells remained unchanged. Repeat muscle biopsies did
not reveal changes in the number and degree of degenerating fibers or inflammation.
The size of the trained muscles did not change. We conclude that a supervised
progressive resistance training program in IBM patients can lead to gains in
dynamic strength of the least weak muscles without causing muscle fatigue and
muscle injury or serological, histological, and immunological abnormalities.
Even though the functional significance of these gains is unclear, this treatment
modality is a safe and perhaps overlooked means of rehabilitation of IBM patients.