Dystonia is a neurological disorder that causes uncontrollable muscle contractions, leading to involuntary and repetitive movements. Dystonia can also cause painful cramping in your affected body parts.
Dystonia is believed to be related to a problem in the part of your brain that controls muscle contractions. You might have dystonia alone or as a symptom of another condition, like Parkinson's disease or multiple sclerosis.
In most cases, the cause of dystonia is unknown (idiopathic dystonia). But it can be genetic (hereditary) or acquired (secondary dystonia), which occurs after damage to the brain from injury, environmental contaminants, or certain medications.
How much dystonia affects someone's ability to function varies from person to person. But the inability to control your muscle movements and the pain and exhaustion that can accompany dystonia can make it difficult to hold down a job. If your symptoms are severe enough to keep you from working, you might qualify for disability benefits through the Social Security Administration (SSA).
Dystonia can affect your entire body (generalized dystonia) or just part of your body (focal dystonia). Generalized dystonia usually develops during childhood and can start in one part of your body and eventually affect your whole body. Focal dystonia most frequently develops in adulthood and usually affects part of your upper body, such as your head, face, throat, neck, arms, or hands.
The primary symptoms of dystonia are uncontrolled muscle movements and cramping, which often get worse over time. Early symptoms can include any of the following:
Your dystonia symptoms might occur or worsen when you're stressed or tired.
You might qualify for Social Security disability insurance (SSDI) or Supplemental Security Income (SSI) disability with dystonia. But you'll need to prove that you can't do any kind of work. Social Security will prepare a residual functional capacity (RFC) assessment to determine whether you can still work.
An RFC assessment evaluates your physical and mental ability to perform work-related tasks despite your symptoms and lists what you can and can't do. For example, if your dystonia affects one of your arms, it could severely limit your ability to:
These limitations would reduce the number of jobs you could perform. Or if your dystonia affects your legs, it could greatly diminish your ability to:
Trouble walking or standing, or even getting up from a seated position, could rule out a large number of jobs. The more jobs your RFC eliminates, the more likely it is you'll get disability benefits.
Your RFC will address any cognitive limitations you have as well. Intense muscle contractions caused by dystonia can cause significant pain that interferes with your ability to focus or complete tasks. Social Security must consider how your pain affects your ability to work. Chronic pain could also cause you to miss a lot of work, making keeping a job difficult.
In addition, the side effects of medication used to control pain can cause issues, like:
The combined effect of these limitations could significantly reduce the number of jobs you could perform.
In addition, dystonia that affects your tongue and jaw might cause slurred speech. Being unable to communicate effectively would further limit the jobs you could perform.
Social Security needs to know how dystonia affects your ability to perform day-to-day tasks, like:
You should also ask your treating physician to prepare a medical statement that details your work-related limitations. Social Security will rely on your doctor's statement when assessing your RFC.
Social Security will then compare your RFC to your past jobs. If it doesn't look like you could do your prior work because of your limitations, the SSA will try to identify other types of jobs you could do within your RFC. If your RFC indicates that you can't perform any jobs, given your limitations, you'll be awarded disability benefits.
Learn more about how Social Security decides if you can work.
Another possible way to qualify for disability is by meeting the requirements of an official disability listing. Social Security publishes the criteria for many medical conditions that are severe enough to qualify automatically for disability benefits.
Social Security doesn't have a specific listing for dystonia. But there's a disability listing for Parkinson's disease (listing 11.06), which has symptoms closely related to dystonia (and can include dystonia).
If Social Security considers your symptoms to be of equivalent severity to those in the parkinsonian listing, you could qualify for disability benefits under that listing. For instance, dystonia's involuntary movements can result in severe problems walking and using your hands. Social Security might consider these limitations similar enough to those in the Parkinson's listing to qualify for benefits.
To qualify for benefits under the Parkinson's listing, your medical records must document one of the following:
You must also provide Social Security with your complete medical history, dating back to the onset of your dystonia. Your medical records should show the basis of your diagnosis, such as records of:
Your medical records should also contain information about all treatments or medications you've tried, including their effectiveness and side effects.
If you have dystonia and a mental condition like anxiety or depression, you'll want to include information about your mental condition as well. Social Security must consider the combined effect of all your medical conditions on your ability to work—both physical and mental.
In addition to being medically disabled, you must meet the eligibility requirements for disability. To be eligible for SSDI or SSI, you can't be engaged in any substantial gainful activity—meaning you can't earn more than a limited income ($1,550 in 2024). And your disabling dystonia symptoms must have lasted—or be expected to last—at least 12 months.
To be eligible for SSDI benefits, you must have a significant work history at jobs where you paid FICA taxes to Social Security. Learn more about the SSDI work requirement.
If you're applying for SSDI, you have three options:
If you're applying for SSI, you can call the number above or contact your local office. You can also start an SSI application online, but Social Security must contact you to complete it.
Learn more about choosing the best way to apply for disability benefits.
Updated November 17, 2023