At 51, Kerwin Ifill had a stroke. Though he believed he was in excellent health, a tangle of blood vessels – something called an arteriovenous malformation, or AVM – was hiding in his brain. One day after a regular gym workout, a vessel burst while he was taking a nap.
The brain bleed caused the entire right side of Ifill’s body to go numb. Confused, he called for an ambulance. He was shocked to find out that he’d had a stroke and needed brain surgery. But there were more surprises to come.
“After coming out of surgery, I had a crazy burning sensation in my face,” he said. “It was almost like alcohol being poured into a wound.”
Ten years later, his face still burns – the result of damage to his nerves that can be managed with medication but can’t be fixed.
“Post-stroke pain is not uncommon,” said Dr. Talya Fleming, Ifill’s doctor and the medical director of the Stroke Recovery Program and Aftercare Program at the JFK Johnson Rehabilitation Institute at Hackensack Meridian Health in Edison, New Jersey.
Though just how common it is remains unclear. Researchers disagree on its prevalence, with some estimating between 10% to as many as 70% of stroke survivors experience pain in the weeks and months that follow.
Post-stroke pain can range from headaches that resolve on their own to chronic, severe joint pain or burning sensations like the type Ifill experiences.
“Some types of pain are due to the mechanical changes that happen in the body after a stroke, and some are due to nerve irritability from the stroke itself,” said Dr. Richard Harvey, a professor of physical medicine and rehabilitation and physical therapy and human movement sciences at Northwestern University Feinberg School of Medicine in Chicago.
“The majority of patients don’t have pain, but a good proportion do,” he said.
Fleming, who also is a clinical associate professor at Hackensack Meridian School of Medicine and Rutgers Robert Wood Johnson Medical School in New Jersey, said people who have severe strokes can be more likely to experience post-stroke pain, and it’s common for people with post-stroke pain to have had a chronic pain condition prior to their stroke.
Having a history of depression, smoking and being younger at the time of a stroke have also been associated with a higher risk for post-stroke pain.
In addition to headaches, the most common types of post-stroke pain include shoulder pain; central post-stroke pain; spasticity; and complex regional pain syndrome, a burning sensation and other symptoms which can be related to nerve damage but may also occur with no evidence of direct nerve injury.
Despite its impact on everyday life, research suggests post-stroke pain is often underdiagnosed and not well managed.
Persistent shoulder pain affects roughly 20% of stroke survivors as many as four years after their strokes, one study found. It typically occurs within three months of a stroke and can be caused by a variety of factors.
“The shoulder is a very complex joint in the body,” Fleming said. “It can move in many directions. We use our arms for so many day-to-day activities, such as eating, dressing and manipulating objects with our hands. If the arm muscles are weak after a stroke, using those muscles can put a strain on the shoulder joint.”
“It’s not the stroke that causes it, but what happens after,” said Harvey, who also is chair of the Brain Innovation Center at the Shirley Ryan AbilityLab, a rehabilitation hospital in Chicago.
Weak muscles from stroke paralysis can lead to poor mechanical glide in the shoulder joint, rotator cuff injuries and inflammation in the joints and tendons, he said.
“If not managed well, this can lead to chronic inflammation and a frozen shoulder (scar tissue that forms in the joint). Acute pain will eventually turn into chronic pain.”
There are numerous ways to treat shoulder pain that results from a stroke, including medications, exercise therapies, steroid injections to reduce inflammation, and electrical stimulation. Harvey said it’s important to get a full diagnostic workup to properly identify the root of the problem.
Central post-stroke pain syndrome occurs when there is damage to the pathway in the brain that transmits signals about pain. For some people, this can cause feelings of extreme pain when they are touched even lightly.
Treatment may include medications for nerve injury or irritation, deep brain stimulation or medications to treat the depression and anxiety this type of pain can cause over the long term.
Fleming said lifestyle changes, such as getting adequate sleep, eating a healthy diet and using correct posture can help alleviate central post-stroke pain, but “unfortunately, we don’t have a precise solution for this.”
Spasticity refers to involuntary muscle reflexes and contractions that may occur following a stroke. This can lead to pain when the movements cause tension around the joints and tendons.
While common, Harvey said that in his experience, this type of pain is not usually severe and can be treated with medications.
Complex regional pain syndrome refers to long-lasting pain and inflammation that can occur following a stroke, heart attack or an injury. It can affect any part of the body but typically affects an arm, leg, hand or foot.
Harvey said this type of pain can occur from a lack of mobility. The body parts “become tender, and people don’t want to move them,” he said. “We don’t see it too often anymore because modern stroke care centers now mobilize people early after stroke.”
Many types of post-stroke pain are temporary if properly managed, Harvey said.
Any type of pain following a stroke should be addressed by a health care professional such as a primary care doctor or neurologist, or at a stroke rehabilitation center, Fleming said. “You don’t have to live with this pain.”
Even pain that can’t be eliminated can at least be reduced, she said.
Ifill uses meditation and a combination of medications to manage his pain. He’s also learned to identify situations and environments that can trigger it.
“When I’m processing information, just one or two things at a time, it’s tolerable,” he said. “But if there are too many things going on, like if I go to the movies, the sound and lighting and noise can make this hard. It feels like everything is closing in on me and that burning sensation increases.”
Rating his pain on a scale of 1 to 10, “the lowest I’ve been able to get it down to is a 4 or 5,” Ifill said. “I’ve just gotten used to it.”
Written by Laura Williamson.
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