Living 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:
June 17, 2014
- Know your illness. Read all you can about dermatomyositis 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.
- Get active. Maintaining an exercise routine can help you maintain and build your muscle strength. Just be sure that you get a detailed plan and recommendations from your doctor or physical therapist before starting an exercise program.
- 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.
- NINDS dermatomyositis information page. National Institute of Neurological Disorders and Stroke. http://www.ninds.nih.gov/disorders/dermatomyositis/dermatomyositis.htm. Accessed March 25, 2014.
- Goldman L, et al. Goldman's Cecil Medicine. 24th ed. Philadelphia, Pa.: Saunders Elsevier; 2012. http://www.clinicalkey.com. Accessed March 25, 2014.
- Imboden JB, et al. Current Rheumatology Diagnosis & Treatment. 3rd ed. New York, N.Y.: The McGraw-Hill Companies; 2013. http://www.accessmedicine.com/resourceTOC.aspx?resourceID=809. Accessed March 25, 2014.
- Oddis CV, et al. Rituximab in the treatment of refractory adult and juvenile dermatomyositis and adult polymyositis: A randomized, placebo-phase trial. Arthritis and Rheumatology. 2013;65:314.
- Miller ML. Diagnosis and differential diagnosis of dermatomyositis and polymyositis in adults. http://www.uptodate.com/home. Accessed March 25, 2014.
- Miller ML, et al. Malignancy in dermatomyositis and polymyositis. http://www.uptodate.com/home. Accessed March 27, 2014.
- Miller ML, et al. Initial treatment of dermatomyositis and polymyositis in adults. http://www.uptodate.com/home. Accessed March 27, 2014.
- Miller ML, et al. Treatment of recurrent and resistant dermatomyositis and polymyositis in adults. http://www.uptodate.com/home. Accessed March 27, 2014.
- Vleugels RA. Management of refractory cutaneous dermatomyositis. http://www.uptodate.com/home. Accessed April 11, 2014.