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Diseases > Polymyositis (PM) > What is it going to do to me?

What is Myositis going to do to me?

What are the Signs and Symptoms of Myositis?

Myositis is not a disease that comes on quickly. One of the first things people with myositis notice is fatigue. It can take a while before a person notices the muscle weakness since it happens gradually, usually over several months. People with myositis might start to have trouble getting up from a chair, climbing the stairs or lifting things above their head.

When myositis is more severe, it can cause problems with things like swallowing. This is serious because it can cause a person to choke or breathe things into their lungs.

Myositis can also cause weight loss. People lose weight because of a loss of appetite or from the disease itself.

In some people with myositis, inflammation can be seen in other places.  One of the commonest places is the joints with arthritis.  Arthritis leads to pain and stiffness in the joints. The stiffness is usually worse in the morning or after a period of rest. In some people, it gets better once the joints have had a chance to get “worked out.”

Inflammation in the lungs can also be seen with myositis. This can cause shortness of breath. It can also rarely cause pain with a deep breath.

In the worst cases, myositis can cause weakness in the heart muscle and the muscles that help you breathe. This is very rare.

People who have dermatomyositis also get a rash. Sometimes the rash happens up to 1 year before the muscle weakness comes on. The rash can occur in several different places, but the most common places are:

  • Backs of the hands or over the knuckles
  • Chest (this often forms a “V”)
  • Shoulders (like a shawl)
  • Face and forehead

Some people with myositis may also develop swelling around the eyes. They can also develop a condition called “Raynaud’s phenomenon.” This causes the fingers and toes to turn white in the cold.

Finally, myositis can also be seen with other rheumatic diseases. Muscle inflammation can be seen with Sjogren’s syndrome, lupus, and systemic sclerosis (scleroderma).

Cancer and Myositis

In a small number of patients myositis may be accompanied by cancer. The cancer somehow turns on the immune system and causes the myositis. Treating the cancer often helps the myositis. However, it is very important to also treat the myositis as described below. Everyone with myositis should be screened for cancer. Please tell your doctor if a first degree relative (Mom, Dad, brother, or sister) has ever had cancer. Common tests would include:

  • CT scan of Chest, Abdomen, and Pelvis
  • Mammogram for women
  • Prostate exam and PSA test for men
  • Pap smear for women
  • Ca 125 testing for women
  • Stool testing for blood and a colonoscopy
  • Thyroid ultrasound and thyroid testing

Work and Myositis

The weakness and fatigue caused by myositis can sometimes limit people’s normal activities, including work. But there are things you can do to lessen the impact of myositis on your work and daily routine. Adjusting features of your workplace can help make working with myositis easier. For example, adjusting the position of chairs and desks for proper posture can help. You can also make adjustments to the seat of your vehicle to make driving more comfortable and reduce the stress on your shoulders and hips.

Travel and Myositis

Traveling is still possible when you have myositis. It is best to be organized prior to your trip to ensure a smooth, comfortable, and enjoyable time. Be sure to pack an extra supply of prednisone in case you have a flare while away.  It is important to discuss all of your travel plans with your health care team. If your myositis is very severe travel may not be recommended.

Sex and Myositis

Although myositis does not particularly cause a loss of sex drive, it can cause weakness, fatigue and emotional hardships. These hardships can create barriers to sexual needs, ability and satisfaction. Take comfort knowing that sex and intimacy can be maintained in people with myositis … it can even draw partners closer together, especially through improved communication between mates.

For more information on intimacy and arthritis, a great book is Rheumatoid Arthritis: Plan to Win by Sheryl Koehn, Taysha Palmer and John Esdaile. Many of the tips can also be applied to people who have myositis, whether their joints are involved or not.

Read more – What can I do about it?