Disability Benefits for Myositis, Dermatomyositis or Polymyositis

Myositis (my-uh-SY-tis), dermatomyositis (DUR-muh-toe-my-uh-SY-tis), and polymyositis (pah-lee-my-uh-SY-tis) are medical diagnoses for several uncommon inflammatory diseases that can cause chronic muscle weakness and myalgia (muscle pain). Myositis is the umbrella term for these disorders—which can also include juvenile myositis and inclusion body myositis—while dermatomyositis and polymyositis are specific types of myositis that affect different parts of the body.

Muscle inflammation is the characteristic symptom of myositis. Weakness and pain caused by inflamed muscles can make it difficult to perform basic movements such as walking, picking up objects, climbing stairs, or getting up from a chair. If you're no longer able to work full-time because of functional limitations caused by myositis, you may qualify for Social Security Disability Insurance (SSDI) or Supplemental Security Income (SSI).

What's the Difference Between Myositis, Dermatomyositis, and Polymyositis?

Myositis broadly refers to several autoimmune disorders that cause muscle inflammation. Autoimmune disorders occur when your body's immune system begins to attack healthy cells instead of fighting off harmful ones. These disorders are usually diagnosed and treated by a rheumatologist (a doctor who specializes in inflammatory diseases).

Dermatomyositis is a kind of myositis that can cause a skin rash in addition to muscle weakness and myalgia. Polymyositis doesn't cause a skin rash, but is situated on the muscles closest to your torso, and can affect your ability to breathe. Inclusion body myositis (IBM) is a progressive form of myositis that usually appears after age 50 and gradually weakens the muscles. Juvenile myositis is a rare form of myositis found in children which may or may not cause a skin rash.

Is Dermatomyositis or Polymyositis a Disability?

The Social Security Administration (SSA) awards disability benefits to people who have a medically determinable impairment that keeps them from working full-time for at least one year. That means that you either meet the requirements of a Blue Book listing ("medically disabled") or that your limitations are significant enough to rule out all competitive employment ("vocationally disabled").

Qualifying for Disability by Meeting a Blue Book Listing

Social Security's "Blue Book," also called the "listing of impairments," is a category of around 100 medical conditions that the agency considers especially severe. Each "listing" has a set of criteria that must be present in your medical records in order for the SSA to award you benefits automatically without having to see whether any jobs exist that you can do. Qualifying for disability in this manner is called "meeting a listing."

Polymyositis and dermatomyositis are covered under listing 14.05 in the Blue Book section for immune disorders. If you've been diagnosed with one of these types of myositis and you have significant difficulties with swallowing, breathing, or mobility as a result, you may meet the requirements of listing 14.05. Here are the five ways you can meet the listing:

• You have proximal limb-girdle (pelvic or shoulder) weakness and you're unable to use both upper extremities—either due to bilateral muscle weakness or because you need one or both limbs to operate a prescribed assistive device such as a wheelchair.
• You have dysphagia (trouble swallowing) with aspiration (accidental inhalation of food or water) due to muscle weakness.
• You have trouble breathing due to weakness of the diaphragm (a large muscle at the base of your lungs) or the intercostal muscles (which help your ribcage contract and expand).
• You have diffuse calcinosis (abnormal deposits of calcium spread throughout your muscles or other soft tissue) that causes you to have issues with moving your joints or digesting your food.
• You have repeated manifestations (symptom flare-ups) of at least two "constitutional symptoms" of polymyositis and dermatomyositis—severe fatigue, fever, malaise, or involuntary weight loss—that cause a marked limitation in your daily activities, social functioning, or ability to complete tasks on time.

Social Security considers "repeated manifestations" to mean flare-ups that occur on average three times per year, with each episode lasting two weeks or more. But you can still qualify if you have fewer (but much longer) or shorter (but much more frequent) flare-ups as well, as long as they result in at least one marked limitation in an important functional area.

Qualifying for Disability by Being Unable to Sustain Employment

Not everyone with myositis will be able to meet the requirements of listing 14.05—for example, if you have proximal limb-girdle weakness but you're still able to use your dominant hand to grab and move objects. But you can still receive disability benefits if you have a residual functional capacity (RFC) that rules out all full-time jobs.

Your RFC is a set of restrictions on what you can and can't do on a consistent basis at work. It can include a number of factors that aren't mentioned in the listings but still affect your ability to perform different job tasks. People with myositis may experience gastrointestinal distress, myalgia, and shortness of breath that limits the amount of weight you can lift, how long you can stand and walk for, and whether you can maintain regular attendance. If your RFC states that you can't lift 10 pounds, be on your feet for two hours per day, or complete job duties on time, that basically rules out all competitive employment.

What Medical Documents Do You Need to Qualify for Disability With Myositis?

Your medical records are the foundation of your disability claim. Social Security reviews your records at almost every step of the disability determination process to see if you have a severe impairment, check whether your impairment meets a listing, and decide which limitations to include in your RFC. Lack of medical evidence is one of the main reasons why disability claims get denied, so make sure you've gotten at least some treatment for myositis, polymyositis, or dermatomyositis before you submit your application for benefits.

Your Records Should Support Your Diagnosis

While the SSA is more concerned with the functional limitations resulting from your myositis, the agency will also be interested in the objective medical tests and evaluations your doctor used to arrive at the diagnosis. Ideally, your records should contain a muscle biopsy or electromyography showing elevated serum muscle enzymes (creatine phosphokinase, aminotransferases, and aldolase). The presence of abnormal muscle enzymes will signal to the agency that your diagnosis is valid.

Additionally, if you have a diagnosis of dermatomyositis, your records should contain evidence of the skin rashes characteristic of the disorder. These can simply be photos of discoloration on your knuckles, elbows, chest, back, face, or eyelids—the most common locations for a dermatomyositis rash.

Your Records Should Detail Your Symptoms

Even if you've been diagnosed with myositis, if you don't have evidence that the symptoms interrupt your daily routine in a meaningful way, the SSA can't find that you're disabled. Tell your doctor if you have any of the following polymyositis and dermatomyositis symptoms you have so that they can be included in your doctor's notes:

• muscle weakness
• stiff joints
• trouble swallowing or digesting food
• recurrent infections of the respiratory or digestive tracts
• difficulty breathing, and
• skin rashes.

Myositis is often treated with corticosteroids and anti-inflammatory medications to help suppress the abnormal immune system response causing the disorder. If you're experiencing any side effects, physical or mental, from medications you're taking—such as mood changes or swelling in your hands and feet—let your doctor know. Social Security must consider these side effects when assessing your RFC.

Your Records Should Support Your Functional Limitations

Functional limitations are a key part of the disability determination process, particularly when deciding if you have extreme limitations under listing 14.05 or what work restrictions to include in your RFC. Social Security will want to see evidence, preferably in the form of physical examinations by your doctor, of any difficulties you have in moving around. For example, patients with inclusion body myositis often have trouble using their wrists and hands, which could keep them from performing jobs involving frequent typing or gripping small objects.

Your doctor's notes should document the clinical signs and symptoms of myositis that cause the limitations. For example, if you have dermatomyositis in the shoulder girdle, your doctor should mention any observed weaknesses in the trapezius, levator scapulae, and rhomboid muscles. Then when the SSA reviews the notes, they can include restrictions on your ability to lift, carry, or reach objects at work. Similarly, if your doctor notices that you have myalgia in your pelvic muscles that makes it difficult to squat, crouch, or climb stairs, the SSA can restrict you from jobs involving those motions.

Can You Get a VA Disability Rating for Myositis?

Veterans who have service-connected myositis may qualify for a disability rating from the VA. The diagnostic code for myositis in the Schedule for Rating Disabilities is 5021. However, the VA will rate your disability using the percentages for degenerative arthritis, which are assigned according to how severely reduced your range of motion is in the affected area. For example, if the muscles in your arm are so weak that you can only extend it slightly away from your trunk, your disability rating may be 40%, but if you can still raise your arm directly ahead of you at shoulder level, your rating will be 20%.

How to Apply for Disability Benefits

An easy way to apply for Social Security disability benefits is by using Social Security's online web portal. You can also file a claim over the phone by calling the national disability hotline at 800-772-1213 (TTY 800-325-0078) between 8 a.m. and 7 p.m., Monday through Friday. If you'd prefer to apply in person, you can make an appointment at your nearest Social Security field office.

When you apply, make sure to tell the SSA about all medical impairments for which you've been diagnosed. Polymyositis and dermatomyositis are often comorbid (occurring at the same time) with other conditions such as vasculitis, cardiac arrhythmias, and Raynaud's phenomenon. Social Security is required to consider how your combined impairments affect your ability to work, so if you leave something off the list, the agency may deny your claim.

Veterans can apply for benefits by submitting VA Form 21-526, Application for Disability Compensation and Related Compensation Benefits. The VA encourages veterans to submit this form electronically, but you can also print it out and bring it with you to your regional VA field office. Learn more about how to apply in our article on filing for veterans' disability benefits.

What if You Don't Qualify for Disability Benefits?

There are several reasons why your disability application may be denied. You might not meet the financial eligibility criteria for either of the two Social Security disability programs, or the agency decided that your limitations weren't severe enough to keep you from returning to your past relevant work. Veterans who aren't approved for VA benefits might not have submitted adequate evidence demonstrating that their myositis was connected to their time on active duty.

There isn't much you can do if you don't meet the preliminary legal requirements for receiving Social Security benefits, but the agency can make mistakes when determining technical eligibility, so you can double-check with a representative from your local field office. However, if you were denied because Social Security thought you could return to your past work or have transferable skills that you could use in other jobs, you may want to consider consulting an experienced disability lawyer to get a sense of how strong a possible appeal would be.

Veterans can also appeal a denial of benefits, which they can do online or by speaking with a representative at a local VA field office. While many Social Security disability attorneys have experience working with the VA, not all do, so you may wish to get a lawyer who specializes in veterans' disability compensation to work on your appeal. You can find more information, including search tips, in Nolo's article on hiring a VA lawyer.