Central Pain Syndrome: What would a cure mean?

The story of Patti

Central pain syndrome, CPS (AKA thalamic pain and post-stroke pain) is an unimaginable, relentless, agonizing pain caused from damage to the central nervous system (brain or spinal cord). https://rarediseases.org/rare-diseases/central-pain-syndrome/

Since developing CPS in 2010 secondary to a thalamic (deep brain) cavernous malformation, my pain and symptoms have evolved and I’ve forgotten what it feels like to not be in constant pain. I look inward and ponder, ‘what would a cure mean’?

I could touch, hold, feel and use my affected hand without feeling sensations of razor blades slicing through my skin.

Taking a shower would no longer feel like electrified ‘raining’ needles, and clothes would no longer feel like sand-paper on a burn.

I would no longer need distractions to cope with electrified tingling, burning, throbbing, stabbing pain, and the distorted and amplified sensations of CPS.

Quality of life would improve and I could look forward to participating in activities I cannot presently do, or am limited in because of CPS. Life would be more fulfilling and independent.

The pain and symptoms associated with CPS is something no one should have to suffer and endure 24/7 with minimal to no relief. However, until more awareness is raised and research is increased, patients like myself will continue to be disregarded, overlooked or misdiagnosed by healthcare professionals, all the while coping moment-by-moment on their own.