Central Pain Syndrome: Lives Turned Upside Down

By Patti, Central Pain Syndrome, Cavernous Malformations, United States, January 29, 2020

In 2010, my life and my husband's was turned upside down when I developed central pain syndrome, CPS, (AKA thalamic pain & post-stroke pain) secondary to a brain hemorrhage from a cavernous malformation, requiring surgery to remove the bleeding vascular malformation deep in my brain.

Upon awakening from surgery, my entire left-side was numb, non-functional and I had a pins and needle sensation in my left hand which was identified as CPS.
Following surgery, intensive rehabilitation was necessary to re-learn how to walk, take a shower, fix simple meals and regain my strength and adapt to the “new me.”

CPS is a very complex, poorly understood source of intractable pain and is caused by damage to the central nervous system. Many healthcare professionals lack knowledge and CPS is often overlooked or misdiagnosed. There is no cure for the relentless electrifying burning, throbbing, stabbing, tingling pain and distorted sensations, and treatment is limited to anticonvulsants, antidepressants and muscle relaxers prescribed through my neurologist. None of these medications have provided relief of my pain and agony. Coping is moment-by-moment and participation among CPS Facebook communities, as well as distractions such as adult coloring and reading novels helps me cope. 

My pain and symptoms have evolved in the worst imaginable ways. Basic or slight movements, activities, stress, cold weather and barometric changes increase my pain. Activities once enjoyed are now modified to accommodate my needs or are no longer doable. Something as simple as holding hands, turning the pages of a book, petting our cats or grasping a Kleenex feels like razor blades on my affected hand and walking feels like marbles, or jagged rocks under my affected foot.
Because CPS distorts sensations, making the lightest touch feel like sandpaper on the worst imaginable sunburn, my clothes have been replaced with the softest cotton or fleece material.
CPS makes walking very painful, affecting my mobility, requiring the use of a cane around home and a wheelchair or mobility scooter during public outings. 

For my own peace of mind, I've come to the acceptance of the uncertainties and progression of CPS, yet do my best to keep a sense of humor and stay active within limits. 

Until there is more awareness and research, treatments will remain ineffective and patients will continue to suffer.

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