Why Trusting My Senses Is Hard With Central Pain Syndrome

Pain is what you say it is.

I have central pain syndrome (CPS) as a result of thalamic strokes.

I don’t trust my sensations. Things that should be cold, burn. Things that should be normal movements, shock at random times. A simple brush by from someone translates into unbearable discomfort and you can’t reason why. Even loud noises can trigger an annoyance so disturbing you question your sanity, complete with breakdown panic attacks. Logic says this isn’t right, but the body says differently.

Central pain syndrome is a unique and horrible condition brought up from the depths of hell. It is an invisible pain. It can occur as a result of many conditions including stroke, multiple sclerosis, tumors, epilepsy, spinal cord injuries or Parkinson’s disease. It is damage to the central nervous system (CNS) that causes a misinterpretation of pain.

My pain syndrome was specifically caused by a series of thalamic strokes. I have a few resulting lesions on my thalamus. The thalamus is a central brain feature that relays information from incoming signals outside the body, translates and sends that information to different areas of the body for interpretation. When damaged, the thalamus sends an equally damaged signal for interpretation to parts of the body. This makes for many unneeded tests and procedures “just to be safe.” For instance, a cold breeze on your skin should translate into a feeling of cold that may or may not need attention. With CPS, that same cold breeze could translate into a painful, burning feeling. For me, lying on one side for several hours at night translates into severe muscle spasms throughout the right side of my abdomen. There is nothing to do except ride it out.

Thankfully, my experience is moderate. It’s constant, but not unbearable at this moment. Being a former nurse, mom of three, including a 21-year-old with a very rare chromosome anomaly and also being diagnosed with syringomyelia, I’ve adapted to my new world as best I can thanks to an antidepressant and an incredible husband.

Central pain syndrome is an invisible, incredibly painful, sanity-questioning, incurable condition. It can cause large disruptions in life, but identifying, educating, understanding and just being kind to the person next to you who seems to be in pain, even if you cannot feel it yourself, can make this diagnosis bearable.