WHAT YOU SHOULD KNOW:
- Polymyositis is an inflammatory disease, of an unknown cause, involving the muscles. With polymyositis, there is inflammation and weakness of your muscles. The muscles of the arms and legs are most commonly affected. These symptoms usually get slowly worse over weeks to months. Caregivers do not exactly know what causes polymyositis. It is thought that a problem in the immune system or certain viruses may cause polymyositis.
- Signs and symptoms include muscle weakness that develops slowly over weeks or months. Other symptoms, such as muscle shortening, fever, feeling more tired than usual, and joint pains may be seen. Polymyositis may also affect other body parts. You may have heart problems and trouble swallowing or breathing. Tests such as a muscle biopsy, an electromyogram, an magnetic resonance imaging (MRI), and blood tests may be done to diagnose polymyositis. Treatment includes steroids and immunosuppressants. Physical, occupational, and swallowing therapies may also be helpful. With treatment, including medications and physical therapy, you may be able to continue your usual activities for a longer period of time.
AFTER YOU LEAVE:
Take your medicine as directed.
Call your primary healthcare provider if you think your medicine is not helping or if you have side effects. Tell him if you are allergic to any medicine. Keep a list of the medicines, vitamins, and herbs you take. Include the amounts, and when and why you take them. Bring the list or the pill bottles to follow-up visits. Carry your medicine list with you in case of an emergency.
Ask for information about where and when to go for follow-up visits:
For continuing care, treatments, or home services, ask for more information.
- Steroids: This medicine may be given to decrease inflammation.
- Immunosuppressives: The immune system may see normal cells as abnormal and attack them. When normal muscle cells are attacked, it causes the symptoms of polymyositis. These medicines may be given to slow down the attack on muscle cells by the immune system. Do not stop taking these medicines without your caregivers OK. Stopping on your own can cause problems.
- Do not take any new medicines or stop your current medicines without first talking to your caregiver.
You may have the following:
- Hydrotherapy: This is a gentle water exercise program. It may strengthen muscles that are not damaged by polymyositis. Your physical therapist may encourage you to try hydrotherapy.
- Massage and stretching: Gentle body massages and stretching may help keep you from getting contractures. A contracture is a shortened muscle that may make a joint difficult to move.
- Physical therapy: You may need to see a physical therapist to teach you special exercises. These exercises help improve movement and decrease pain. Physical therapy can also help improve strength and decrease your risk for loss of function.
- Occupational therapy: Occupational therapy (OT) uses work, self-care, and other normal daily activities to help you function better in your daily life. OT helps you develop skills to improve your ability to bathe, dress, cook, eat, and drive. You may learn to use special tools to help you with your daily activities. You may also learn new ways to keep your home or workplace safe.
You may need to do the following:
- Exercise: Exercise makes the heart stronger, lowers blood pressure, and helps keep you healthy. Begin to exercise slowly and do more as you get stronger. Talk with your primary healthcare provider before you start an exercise program.
- You may feel safer if you use a 4 prong (pointed) cane or a walker when walking. To keep from falling, remove loose carpeting from the floor. Using chairs with side arms and hard cushions will make it easier to get up or out of a chair. Put grab bars on the walls beside toilets and inside showers and bathtubs. These will help you get up after using the toilet or after bathing. Grab bars will also help to keep you from falling in the shower. You may want to put a shower chair inside the shower.
For support and more information:
Polymyositis is a life-changing disease for you and your family. Accepting that you have polymyositis may be hard. You and those close to you may feel angry, depressed, or frightened. These are normal feelings. Talk to your caregivers, family, or friends about your feelings. You may also want to join a support group. This is a group of people who also have polymyositis. Call or write one of the following organizations for more information.
- Muscular Dystropy Association
3300 E. Sunrise Drive
Tucson , AZ 85718
Phone: 1- 800 - 344-4863
Web Address: http://www.mdausa.org
- The Myositis Association
1233 20th St. NW, Ste 402
Washington, DC , 20036
Phone: 1- 202 - 887-0088
Web Address: http://www.myositis.org
CONTACT A CAREGIVER IF:
- You are having swallowing problems.
- You have more weakness than usual.
- You have questions about polymyositis, your medicines, and treatment.
SEEK CARE IMMEDIATELY IF:
- You are having breathing problems.
- You are so depressed you feel you cannot cope with your disease.
- You have a fever.
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The above information is an educational aid only. It is not intended as medical advice for individual conditions or treatments. Talk to your doctor, nurse or pharmacist before following any medical regimen to see if it is safe and effective for you.