What is Dystonia?

Dystonia is a movement disorder that is commonly associated with hypermobile Ehlers-Danlos Syndrome. It is characterized by involuntary muscle contractions that cause repetitive or twisting motions. Dystonia ranges in severity, and can manifest as tremors, cramping, and/or twitches. It can be centralized to one area of the body or it can affect the entire body.


Dystonia is a complex condition that is not easily diagnosed. There are nearly 20 forms of dystonia that have been identified to date! The four most common are functional dystonia, generalized dystonia, trauma induced dystonia, and dopa-responsive dystonia.


Functional dystonia is caused by nervous system malfunction, causing unintended movement/positioning of the body. Functional dystonia generally causes a mix of motor symptoms, including tremors, gait disorders, and tics. It is not uncommon to experience pain, weakness, sensory symptoms, and even non-epileptic seizures with this condition. Stress and anxiety have been found to exacerbate symptoms.


Alternatively, generalized dystonia that is not limited to one part of the body, but that affects multiple muscle groups. The onset is typically during adolescence, and can be mistaken for other neurological conditions such as cerebral palsy. It is known to cause muscle spasms, rapid jerking movements, and abnormal posture and gait. There is not a definite link between generalized dystonia and EDS that has been established, but there are recorded cases of patients diagnosed with both.


Trauma induced dystonia specifically follows an episode of physical trauma to the body. Symptoms will typically affect the side of the body which is opposite to the side of the brain injured by the trauma, and can be delayed anywhere from months to years after the injury. Several forms of dystonia can be caused by injury and thus can fall under this umbrella, including:

  • Cervical dystonia: Painful muscle contractions in the neck

  • Oromandibular dystonia: Involuntary muscle contractions in the jaw, tongue, and face

  • Blepharospasm: Involuntary and abnormal contractions in the eyelids


And finally, dopa-responsive dystonia (DRD) refers to several forms of dystonia disorders that respond to the medication Levodopa, a synthetic form of dopamine. This condition is generally inherited from an affected parent. While symptoms can often be mild, they will typically emerge during childhood in the form of inward turning legs and dystonia centralized in the lower half of the body. Over time, this dystonia can spread to the rest of the body - it is also often accompanied by difficulty walking and episodes of depression. Later in life, symptoms may manifest into Parkinsonism, a condition that resembles Parkinson’s Disease with slow movement, muscle rigidity, and postural instability.


In our clinic, we have found that we most commonly see EDS patients with cervical dystonia or dopa-responsive dystonia out of all types.


Dystonia requires diagnosis from a neurologist, and may require a series of observations and assessments. Ultimately, each form of dystonia requires specific management that can differ depending on the case - no matter the type, creating a team of your neurologist, physical and occupational therapist, and psychiatrist should be your first step. Together, they can help address and manage your symptoms.


Be sure to consult with your primary care physician or other medical professionals in regards to your medical concerns. This text cannot and should not replace advice from the patient's healthcare professionals. Any person who experiences symptoms or feels that something may be wrong should seek individual professional help for evaluation and/or treatment. This post is for informative purposes only.


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