Myositis is a chronic inflammation of the muscles that can stop you from being able to climb the stairs to meet your newborn nephew or keep up with your friends on the walking tours of that trip you’ve been looking forward to.
It can sneak up on you when you are reaching to put the groceries away or hug a loved one.
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How Common Is Myositis?
Myositis is extremely rare; there are some PCP who have never seen a case. Roughly “75,000 people” are dealing with it today. That means there are far fewer specialists to meet the needs of a person who is diagnosed. For example, 40 million people in the United States have diabetes. There are many doctors who treat that.
Symptoms of the Condition
Inflammation is not just a buzz word your favorite influencer won’t shut up about; it is something that has the power to affect every part of your day. If you’re trying to work, play, or exercise, inflammation can get in the way. The inflammation from this autoimmune disease causes swelling and extreme discomfort.
Myositis is a “subcategory of myopathy,” per the American Journal of Roentgenology. Myopathy refers to any disorder that affects the skeleton and muscles. Myositis symptoms can arrive in an acute or subacute manner. This means that they can show up in a couple of days or in a couple of weeks. Muscles and skeletons are the main location of the condition’s impact, but inflammation from myositis shows up internally and externally. The “skin, joints, lungs, heart, and gastrointestinal tract” are affected by myositis, according to a recent article in Current Opinion in Rheumatology.
Because swelling and inflammation are symptoms of many other health conditions, it can frequently be misdiagnosed or underdiagnosed.
Those with scoliosis experience worse myositis outcomes than those without a scoliosis diagnosis. That condition disproportionately impacts Black people, despite the increase in childhood screening efforts.
The Types of Myositis
Causes of myositis are still being researched. It is generally considered to be a result of the immune system actively attacking muscle fibers.
There are several different types of myositis. The main five are dermatomyositis (DM), polymyositis (PM), immune mediated necrotizing myositis (IMNM), inclusion body myositis (IBM), and anti-synthetase syndrome (ASyS).
Dermatomyositis “shows up as muscle weakness along with a rash on the eyelids, cheeks, nose, back, upper chest, elbows, knees, and/or knuckles.” According to the Journal of Neuromuscular Diseases, dermatomyositis is the only kind of myositis that affects children. It is the second most common subtype. Black people are three times more likely to be affected by this type of myositis than White people. It can come with a “red, patchy skin rash.”
Inclusion body myositis is characterized by slowly moving symptoms.
Myositis primarily affects those in middle-age, but young adults can be impacted as well. Polymyositis, which begins in the mid-section of the body, begins in people over twenty. It progressively worsens.
Diagnosing Myositis
Myositis can be diagnosed through a combination of blood tests, electronic scans, and muscle and skin biopsies. If you suspect you have myositis, you should document your symptoms with as much detail as you can and present that information to your health care provider.
The Myositis Association reports that many physicians are unfamiliar with and underinformed about myositis. This leaves them unable to recognize the condition when they come across it.
Some people experience delays in diagnosis that last up to five years. This has a negative impact on the quality of life of the people awaiting the diagnosis. According to a 2022 article from the Orphanet Journal of Rare Diseases, this is due to the “range of clinical features, lack of comprehensive and internationally accepted diagnostic criteria.”
Systemic issues can lead to diagnostic delays. Some people have encountered delays in diagnosis because of the red tape of healthcare systems, especially when HCP have to authorize access to specialty care.
What Kind of Treatments Are Available?
If you have been diagnosed with the condition, it can be treated with immunotherapy and physical therapy. One subtype of myositis that does not respond to immunotherapy is inclusion body myositis (IBM).
“It is characterized by a gradual decline in muscle strength, leading to considerable impairment in everyday activities such as walking, fine motor skills, and swallowing,” according to the Journal of Brain Disorders. It is limited to being treated by physical therapy only.
Myositis May Impact Your Mental Health
Feeling like you are not in control of your movement can show up in your mental health. Myositis patients can have their mental well-being reduced because of the symptoms of the condition.
Juvenile patients in particular can feel the mental health effects of myositis more severely. If your child is diagnosed, you should set up a mental health plan to address their potential challenges directly.
If you, a loved one, including a child, is experiencing any of the symptoms of Myositis, ask your HCP for a referral to a rheumatologist who often has more expertise with the condition.
