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Coping and support
By Mayo Clinic staffLiving with a chronic autoimmune disease can make you wonder at times whether you're up to the challenge. To help you cope, try supplementing your medical care with the following suggestions:
- Know your illness. Read all you can about polymyositis and other muscle and autoimmune disorders. Talk to other people who have a similar condition. Don't be afraid to ask your doctor any questions that you may have concerning your illness, diagnosis or treatment plan.
- Be a part of your medical team. Consider yourself, your doctor and any other medical experts involved as a united front in the fight against your disease. Following the treatment plan you agreed to is vital. Keep your doctor updated on any new signs or symptoms you may experience.
- Know and assert your limits. Learn to say no effectively and ask for help when you need it.
- Rest when you're tired. Don't wait until you're exhausted. This will only set you back further as your body tries to recuperate. Learning to pace yourself can help you maintain a consistent level of energy, accomplish just as much and feel better emotionally.
- Acknowledge your emotions. Denial, anger and frustration are normal feelings when you must deal with an illness. Things don't seem normal or fair and likely seem out of your control. Feelings of fear and isolation are common, so stay close to your family and friends. Try to maintain your daily routine as best you can and don't neglect doing those things you enjoy. Many people find support groups to be a helpful resource.
References
- NINDS polymyositis information page. National Institute of Neurological Disorders and Stroke. http://www.ninds.nih.gov/disorders/polymyositis/polymyositis.htm. Accessed May 26, 2011.
- Baer A. Advances in the therapy of idiopathic inflammatory myopathies. Current Opinion in Rheumatology. 2006;18:236.
- Dalakas MC. Inflammatory disorders of muscle: Progress in polymyositis, dermatomyositis and inclusion body myositis. Current Opinion in Neurology. 2004;17:561.
- Miller ML. Clinical manifestations and diagnosis of adult dermatomyositis and polymyositis. http://www.uptodate.com/home/index.html. Accessed June 1, 2011.
- Di Martino SJ, et al. Newer therapeutic approaches: Inflammatory muscle disorders. Rheumatic Disease Clinics of North America. 2006;32:121.
- Koski CL, et al. Intravenous immunoglobulin use for neurologic diseases. Journal of Infusion Nursing. 2006;29:S21.
- Baer AN, et al. Polymyositis & dermatomyositis. In: Imboden JB, et al. Current Rheumatology Diagnosis & Treatment. 2nd ed. New York, N.Y.: The McGraw-Hill Companies; 2007. http://www.accessmedicine.com/content.aspx?aid=2726184. Accessed June 6, 2011.
- Cordeiro AC, et al. Treatment of inflammatory myopathies. Postgraduate Medical Journal. 2006;82:417.
- Walker UA. Imaging tools for the clinical assessment of idiopathic inflammatory myositis. Current Opinion in Rheumatology. 2008;20:656.
- Miller ML, et al. Initial treatment of dermatomyositis and polymyositis in adults. http://www.uptodate.com/home/index.html. Accessed June 1, 2011.
- Miller ML, et al. Treatment of recurrent and resistant dermatomyositis and polymyositis in adults. http://www.uptodate.com/home/index.html. Accessed June 1, 2011.
- Dimachkie MM. Idiopathic inflammatory myopathies. Journal of Neuroimmunology. 2011;231:32.
- Medications. The Myositis Association. http://www.myositis.org/template/page.cfm?id=304. Accessed June 9, 2011.
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