When Disability Benefits Are Available for Dermatomyositis or Polymyositis

People who have inflammatory muscle diseases, including polymyositis and dermatomyositis, often have severe impairments that make their daily life difficult. Individuals who are no longer able to work because of myositis (inflammation of the muscles) may be eligible for Social Security Disability Insurance (SSDI) and/or Supplemental Security Income (SSI).

Myositis is involved in several types of inflammatory myopathies (diseases involving chronic muscle inflammation):

Polymyositis is a muscle disease that causes inflammation of the muscle fibers. The result of the inflammation is weakness in the affected muscles (often the shoulders, hips, or abdomen) that can be severe. It's a chronic disease that has periods of increased symptoms, called flares, and periods of no or minimal symptoms, called remissions.

Dermatomyositis is a similar muscle disease that causes inflammation of the muscle fibers and is characterized by a distinct skin rash. Dermatomyositis often causes weakness in the shoulders, neck, back, and hip.

Inclusion body myositis (IBM) is similar to polymyositis but it generally affects people age 50 and older and causes progressive weakness mostly in the thighs, lower legs, forearms, hands, and fingers.

Disabling Symptoms of Polymyositis and Dermatomyositis

Symptoms of polymyositis and dermatomyositis can include:

• muscle weakness, usually close to the trunk of the body
• stiff joints
• problems with swallowing (dysphagia)
• fatigue, and
• shortness of breath.

Symptoms of inclusion body myositis include:

• difficulty swallowing
• atrophy (shrinking of the forearms and quadriceps), and
• muscle weakness in the arms and legs.

Patients with inclusion body myositis often have trouble using their wrists and hands for gripping and pinching and are prone to drop foot (inability to lift the front of the foot) and tripping and falling.

Complications of Inflammatory Muscle Diseases

Some forms of myositis respond well to treatment, but many individuals with muscle inflammation have severe weakness that persists despite treatment. Weakness in various muscles affected by myositis can cause:

• difficulty breathing
• breathing of liquids into the lungs, causing pneumonia
• difficulty with swallowing, which can cause weight loss and malnutrition
• gastrointestinal problems, including ulcers and bleeding
• infections, particularly in the respiratory and digestive tracts, and
• skin complications, including calcium deposits in the muscles, skin, or connective tissue, which can cause functional limitations.

Getting Disability Benefits for Polymyositis or Dermatomyositis

When applying for disability benefits, it's typically not enough to have a medically diagnosed condition like myositis. The claims examiner who works for the Social Security Administration (SSA) will also gather information to determine whether you're capable of working despite your health symptoms. To find you disabled, the claims examiner must find either that you meet the requirements of one of Social Security's "listings" or that you're unable to perform any job on a full-time basis.

Meeting a Disability Listing

To meet a listing, you must prove that you have all of the requirements of a listing from Social Security's "blue book," which lists impairments that qualify someone to receive disability benefits. The blue book has a specific listing for polymyositis and dermatomyositis, Listing 14.05. The listing focuses on problems with swallowing, breathing, mobility, and using your hands.

In order to meet this listing, you must show that you have at least one of the following symptoms caused by polymyositis or dermatomyositis:

• muscle weakness in the shoulder girdle that severely affects your ability to use your arms
• muscle weakness in the pelvic girdle that severely affects your ability to walk
• muscle weakness that allows solids or fluids to get into your lungs when swallowing
• muscle weakness in the chest and diaphragm that impairs your ability to breathe properly, or
• calcium build-up ("calcinosis") in the muscle, tissue, or skin that limits movement in your joints or intestinal tract.

How can you meet the listing for shoulder girdle weakness? The shoulder girdle involves muscles that allow a wide range of arm movements. These muscles include the trapezius, the levator scapulae, and the rhomboid muscles, among others. To meet this part of the listing, your muscle weakness has to prevent you from being able to use both arms/hands to start, sustain, and finish work activities that require gross movements (like lifting items) and fine movements (like grasping items or typing).

How can you meet the listing for pelvic girdle weakness? The pelvic girdle involves muscles that allow you to rise from a sitting position, climb stairs, and walk effectively. Muscles of the pelvic girdle attach to the sacrum, such as the gluteus and adductor muscles, but can also include muscles of the hip, lower back, abdomen, and groin. To meet this part of the listing, your muscle weakness has to prevent you from walking without an assistive device that either:

• requires two hands (like a walker, bilateral crutches, or a manual wheelchair), or
• requires only one hand (like a cane), but you're unable to use the other hand because it's also impaired.

What if your symptoms are sporadic or in remission? If your myositis is intermittent, you can still qualify for benefits if you have "repeated manifestations" (frequent flareups) of polymyositis or dermatomyositis. You must have at least two symptoms (severe fatigue, fever, malaise, or involuntary weight loss) during these flareups, and the symptoms must significantly limit your daily activities, social functioning, or ability to complete tasks.

Medical Evidence You'll Need to Meet the Listing

In order to prove that you have myositis, your medical records must document your condition, including the results of tests that are frequently used to diagnose muscle inflammation. Elevated serum muscle enzymes and abnormal electromyography and muscle biopsies are common. In addition, for dermatomyositis, your records should document skin symptoms showing the characteristics of the condition.

Your claims examiner will also review your medical records to look for physical limitations associated with polymyositis, dermatomyositis, or inclusion body myositis. Your doctor's treatment notes should specify if you have limitations in your pelvic or hip muscles that cause you difficulty in squatting, crouching, climbing stairs, or rising from a seated position. Or, if your main issues are with your shoulder, chest, or back muscles, your doctor's notes should record whether you have an inability to lift or carry items, reach overhead, or perform fine motor skills like pinching, grasping, or writing.

Being Unable to Work Due to Muscle Inflammation and Weakness

Not everyone with myositis will meet the impairment listing above. For example, maybe you have difficulty walking due to polymyositis, but you can get around okay with just a cane. Even though you won't meet the listing, you might still be able to receive disability benefits if you can prove you can't work any type of job on a full-time basis.

Those with polymyositis and dermatomyositis often have significant physical impairments that go beyond what's required in the listing. For instance, calcium deposits, pain, fatigue, and shortness of breath can all affect an individual's ability to stand for long periods of time or to lift and carry more than 10 to 20 pounds. The degree of your limitations is very important in determining whether or not you are able to work, so it's helpful to have your doctor fill out an RFC form detailing exactly what you can and can't do.

Documenting Multiple Illnesses

Polymyositis or dermatomyositis is often present with another condition; for example, individuals with myositis may also suffer from lupus or different types of cancers or lung problems. Make sure you include any other diagnoses or limitations in your application for disability benefits.

You may want to read our articles on the requirements for disability for these other conditions that are associated with polymyositis and dermatomyositis:

• Raynaud's phenomenon, which causes decreased blood flow in your fingers
• inflammation of the heart muscle
• congestive heart failure
• heart arrhythmia
• lung failure
• renal failure
• vasculitis (inflammation of the blood vessels), or
• cancer, particularly cervical, lung, pancreas, breast, ovarian, and gastrointestinal tract.

How Can I Apply for Disability Benefits for Muscle Disease?

An easy way to apply for Social Security disability benefits is to file your claim online at www.ssa.gov/applyfordisability. You can also file a claim over the phone by contacting Social Security at 800-772-1213, but be prepared for long wait times. For more information, please see our article about applying for Social Security disability benefits.

_{Updated December 8, 2021}