Patti Gilstrap, 62, was diagnosed with central pain syndrome 11 years ago. She tells Brain & Life how she deals with it.

One of my favorite pastimes is to light a scented candle, put on some music, and draw landscapes and floral pictures with colored pencils. Drawing helps distract me from the burning, electrifying sensation on my left side that is a result of central pain syndrome. Playing with my two cats and reading help too.

I've learned to live with the condition because none of the various treatments my neurologist has prescribed—antidepressants, antiseizure medications, muscle relaxants, medical marijuana, acupuncture—really worked. The sensation caused by central pain syndrome feels like sandpaper scraping on sunburned skin.

The condition was caused by damage to my central nervous system during brain surgery for a cavernous malformation. [This rare condition involves a cluster of small blood vessels in the central nervous system that are enlarged and irregular. Because the vessel walls are thin, they may leak or seep blood and can cause brain hemorrhages and seizures.] In 1987, while visiting friends in Reno, I had a seizure and was rushed to the emergency room. A week of tests didn't reveal the cause of the seizure. When I returned home to Oregon, my neurologist did more tests and diagnosed me with cavernous malformation.

A year later, I underwent a successful brain surgery with no complications. Over the next 12 years, I visited my neurosurgeon annually. Every so often, he would discover another cavernous malformation that required surgery. My fourth and last one in 2010 was deep in my brain, above the brain stem. When I awoke from the operation, I knew something was wrong. My entire left side was numb and I had a painful pins-and-needles sensation in my left hand. The nurse told me the pain was called thalamic pain syndrome, which is now more commonly known as central pain syndrome.

I connect with other people with the disorder through Facebook groups such as the Central Pain Syndrome Foundation, Central Pain Syndrome Warriors, and Angioma Alliance. Anytime people join the group, I welcome them, share information, and encourage them to stay strong. Greater awareness about the condition will create better understanding among patients, the public, and health care providers and ultimately lead to more effective ways to combat the pain.

Editor's note: Cavernous malformations are rare, and about 40 percent of patients never have symptoms. Some are caused by genetic mutations, which can result in multiple cavernomas. The condition is monitored through regular imaging. Surgical treatment depends on the size and location of the malformation and symptoms.