Runner’s dystonia is a rare, focal task-specific dystonia (FTSD). FTSD is a type of movement disorder that results in an abnormal involuntary muscle contraction of a specific area of the body during a specific well-learned task, such as running or writing.
Adjusting to life with runner’s or lower limb dystonia can be challenging and require significant changes to a person’s activities and lifestyle, but living well is possible. The early stages of symptom onset, diagnosis, and seeking effective treatment are often the most challenging.
Once a treatment plan is established, individuals can find new and innovative ways to stay active and engaged in daily living.
- Symptoms
Symptoms of runner’s dystonia are characterized by involuntary lower limb movement during running.
- Foot rolls outward so that the sole faces inward
- Foot or leg turns inward
- Foot points downward
- Extension of big toe
- Toe curling
- A sense of tightness or stiffness in the limb
- Changes in walking or running gait
- Knee hyperextension
In severe cases of runner’s dystonia, these symptoms also occur during walking and the affected muscles may also include the pelvis and trunk.
In general, lower limb dystonia in adults seems to affect women more often than men. The age of onset is typically in the mid-40s. In the case of runner’s dystonia, symptoms may develop after periods of prolonged exercise, for example, long-distance running or long-distance walking. Symptoms are often triggered by running, walking, or standing but may be absent at rest.
Individuals with lower limb dystonia often have to adapt their gait while walking or running to compensate for the dystonic symptoms, and/or may require the assistance of mobility devices such as crutches, walkers, or wheelchairs in very severe cases. For those with severe runner’s dystonia, they may stop running all together.
Ironically, symptoms of lower limb dystonia may occur while walking forwards but improve or disappear when walking backwards. Some individuals may be able to temporarily lessen symptoms with a ‘sensory trick’ to another part of the body, such as gently touching the face or head.
- What Type of Doctor Treats Lower Limb Dystonia?
Lower limb dystonia is frequently misdiagnosed, sometimes mistaken for other gait disorders, orthopedic and structural conditions, and psychiatric disturbance. Electrolyte disturbances and disorders of energy metabolism must be ruled out if symptoms occur only with exertion and fatigue.
Individuals with dystonia are encouraged to seek treatment from a movement disorder neurologist or physical medicine and rehabilitation
physician. A movement disorder specialist can diagnose—or rule out—lower limb dystonia and assess any possible underlying causes. A team of medical professionals with various specialties may be appropriate to tailor treatment to the specific needs of the individual.
- Treatments
Treatment to lessen dystonia symptoms may require a combination of approaches. The goal of treatment is to improve a person’s ability to function and move more freely. Regular botulinum neurotoxin injections administered by a qualified medical expert are among the most effective therapies to help relax dystonic muscles and alleviate abnormal movements and postures. Oral medications such as anticholinergics, baclofen, and/or benzodiazepines may also be used for this purpose.
Physical therapy and/or occupational therapy may improve overall daily functioning. Part of the treatment plan may involve using orthotics (wearable medical products or devices) to help lessen symptoms and make it easier or more comfortable to walk. Case reports have demonstrated success with using computer-assisted gait analysis to customize an orthotic specific to a patient’s needs. Orthotic options may
include ankle brace, toe spreaders, rocker bottom shoes, platform or raised heels, or a combination of these. A lightweight ankle foot orthotic (AFO) may worsen dystonia in some and improve walking in others.
Physicians and rehabilitation therapists are beginning to explore the use of wearable stimulation devices to reduce lower limb dystonia with some success. Functional electrical stimulation (FES) devices were originally developed for use in other neurological gait disorders but may be helpful for select individuals with lower limb dystonia, depending on the nature of the symptoms.
Individuals with dystonia frequently experience co-existing depression and anxiety disorders. Evaluation and treatment for possible mental health disorders may be an important part of a comprehensive treatment plan, as untreated anxiety and depression can worsen dystonia and
other movement disorders.
Reprinted with permission from DMRF Dystonia Dialogue, Winter 2024 Vol 47, No 3.
Special thanks to Harini Sarva, MD, from Weill Cornell Medicine in New York City—and a former DMRF clinical fellow—for reviewing this information and Thank you to Dystonia Medical Research Foundation (USA) for allowing us to share this information. The DMRF is a 501(c)(3) non-profit organization dedicated to advancing research for improved dystonia treatments and ultimately a cure, promoting awareness, and supporting the well-being of affected individuals and families.