Pain Management Options for Dystonia

Read online article in the full Summer 2025 issue of Dystonia Dialogue

Pain associated with dystonia can be variable—it can depend on what part of the body is involved, the severity of the dystonia, a person’s age, and comorbidities, which are additional medical conditions.

Physicians who treat people with dystonia can provide several options to treat their symptoms and alleviate pain, ranging from botulinum toxin injections for focal and segmental dystonia, deep brain stimulation (DBS) for generalized dystonia, as well as physical/occupational therapies and complementary therapies as part of an integrative medicine approach.

Goals of Pain Management for Dystonia

DMRF Scientific Director Joel S. Perlmutter, MD, Past Section Chief of Movement Disorders and Professor of Radiology, Neuroscience, Physical Therapy and Occupational Therapy at Washington University School of Medicine in St. Louis, explained that managing pain associated with or exacerbated by dystonia begins with implementing the best approach to reduce dystonia rather than only giving pain medicines.

“Any narcotic is not going to be good for chronic use,” Dr. Perlmutter explained. “And it’s not effective. It may cause substantial adverse effects and lead to addiction in some people, so we try to avoid that.”

Dr. Perlmutter added that there are situations where certain drugs can be effective, combined with other therapies.

“If it’s a person with dystonia and we haven’t tried levodopa, then we should as dystonia occasionally can be dopa responsive,” he said, explaining that patients can be started on a low dose of levodopa to see if the drug alleviates dystonia symptoms.

“Sometimes there are interventions that physical therapists can provide that may include various exercises and stretching to try to reduce the effects of wear and tear injuries,” Dr. Perlmutter added. “Occupational therapists can work toward the same goal, but with a different perspective. They can look at how the person is positioned, for example, at their desk, working on their keyboard, and find better positions to reduce repetitive type injuries that may occur in people with dystonia. That approach helps reduce the impact twisting or unusual postures that contribute to pain and find a position that minimizes the effect of dystonia on a painful part of the body.”

Complementary Approaches to Pain Management

Harini Sarva, MD, Chief of the Division of Movement Disorders at Weill Cornell Medicine, New York City, and a former DMRF clinical fellow, also supports finding a good physical therapist to relieve pain caused by dystonia, especially someone who is well versed in neurology and movement disorders.

“What they’ll end up doing is working on is compensatory mechanisms—compensatory muscles, posture, and all of that is really important,” she said.

Dr. Sarva has also referred dystonia patients to the integrative medicine center at her institution to explore complementary therapies, which are not a replacement for standard medical treatments but may be used in conjunction with other treatments.

These complementary therapies may include:

• Acupuncture: A form of traditional Chinese medicine used for pain relief that involves needle insertion into the affected areas.

• Reiki: A Japanese technique of hands-on therapy for stress reduction and relaxation.

• Alexander Technique: A therapy for stress-related chronic conditions that focuses on improving posture.

• Gentle massage: Rubbing of the soft tissues of the body.

• Transcutaneous Electrical Nerve Stimulation (TENS) device: A type of pain relief therapy that uses a low-voltage electrical current to block pain or change one’s perception of it.

• Yoga: A mind and body practice that involves movement, breathing exercises, and a focus on thoughts and feelings as they happen (mindfulness).

“Local pain acutely is an inflammatory response, but chronic pain is more of a neurological condition,” explained Dr. Sarva. “They’re perceiving pain differently, so there are other means of trying to get to that. That’s where physical therapy and some complementary therapies like acupuncture, mindfulness, biofeedback—those mechanisms are really trying to work at altering the pain pathways in the brain and the way patients perceive pain. In the long run it’s a lot more work, but they’re more meaningful and have more meaningful change, although they’re not always readily available for patients.”

In addition to all these complementary therapies, getting enough sleep is an integral part of dystonia care as sleep disorders are very common and poor sleep can lead to pain aggravation.

Dr. Sarva advised that in addition to asking their medical practitioners about pain management options, dystonia patients can ask members of dystonia support groups—like those supported by the DMRF—for advice on pain relief methods that have worked for them as well.

Dr. Perlmutter noted that a sensory trick—a specific gesture or action that temporarily reduces dystonia symptoms—can also help reduce discomfort in dystonia.

“Sometimes a soft collar will be that sensory trick for that person…We ask the patient what feels best for them,” he said. “They can try a soft collar. If just touching the chin and the soft collar gives that continuous input, then that may help that person.”

Dr. Perlmutter added that a hard cervical collar (neck brace) that renders the neck completely immobile or splints that force muscles into place are usually not recommended for dystonia patients because the muscles will “fight” against the restraint and cause more irritation and problems than benefit for the patient.

Talking to Your Doctor About Pain Management

Dr. Perlmutter advises that patients with dystonia who have questions about pain management should arrive at their doctor’s appointments prepared with details about the pain they have been experiencing, and it is helpful to have these details written down, such as answers to the following questions:

• A description of the pain: What does it feel like? What part of the body is affected?

• What movements tend to make the pain worse? What makes it better?

• Give a severity rating of the pain on a scale of 0 to 10, with 10 being the most severe.

• How long does the pain last?

• How was pain managed in previous treatments: If they’re being treated with botulinum toxin, did that help that pain or not?

“These are things that if they can explain that to the clinician, then the clinician can help review what the proper options are for them,” said Dr. Perlmutter. “If an option—or options—are presented, a patient should always ask, what’s the pro and con of this option? What are the chances it’ll help? What are the potential side effects? How long will this benefit last? Does it need to be repeated or is it a one-time deal? Is there something that we could do for the dystonia rather than going after the pain directly? All those are appropriate questions.”