The story of Patti
I am one of the estimated *1.5 million with Central Pain Syndrome, CPS. CPS is caused by damage to the sensory pathways of the central nervous system and the pain is relentless.
In 2010, I developed CPS secondary to deep brain surgery for the resection of a cavernous malformation (a malformed blood vessel) that has left me coping with the debilitating pain of CPS. Imagine sandpaper continuously scraping your skin with the worst sunburn imaginable or placing a portion of your body in scalding water while performing every day tasks. And while the entire affected side of my body is numb, it is also affected by the burning, electrifying pins and needles, stabbing and incurable pain that has forever changed my life and the life of my husband.
The medications commonly used to treat CPS, such as anticonvulsants, antidepressants and muscle relaxers, including alternative acupuncture and CBD have been ineffective in treating my pain.
The never-ending pain has dramatically changed my life. Former activities I once enjoyed, like bike riding, gardening, walking and car rides, are no longer doable. Because of pain, poor balance and double vision from surgery, I walk with a cane while at home and use a wheelchair when out in public.
Coping with the pain is moment-by-moment and distractions such as adult coloring and reading novels is my main way of coping. Weather and pain levels permitting, time spent outdoors can be enjoyable, as well as an “escape” from pain.
Communicating with family, friends and interactions through participating in Facebook groups helps combat the depression of CPS. Whenever possible, I advocate online for others suffering from CPS. Greater awareness about the condition will create better understanding among patients, the general public and health care providers and ultimately lead to increased research to discover effective ways to combat the pain.
*Central Pain Syndrome Foundation