Central Pain Syndrome (CPS)

There are a serious of issues addressed on my stroke resource page that I wanted to give further individual attention to various conditions I wish doctors would more readily address.

Central Pain Syndrome (CPS)  (previously or also known my many different names including Thalamic Pain Syndrome, Dejerine-Roussy Syndrome, Posterior Thalamic Syndrome, Retrolenticular Syndrome, Thalamic Hyperesthetic Anesthesia, Central Post-Stroke Syndrome) - this information was so very, very hard for me to find. After seeing literally dozens of specialists, I realize that several have used various wording to allude to and even work on addressing this condition, but no one has still ever given me the actual name that I've had to research for myself. (As of this writing, I hadn't yet been given a formal diagnosis, though my doctor later confirmed it.)

According to the Central Pain Syndrome Alliance, "Central pain syndrome (or CPS for short) is a neurological condition caused by damage to or dysfunction of the central nervous system (CNS), which includes the brain, brainstem, and spinal cord. This syndrome can be caused by stroke, multiple sclerosis, tumors, epilepsy, brain or spinal cord trauma, or Parkinson's disease." WebMD reports, "Pain or discomfort may be felt after being mildly touched or even in the absence of a stimulus. The pain associated with thalamic syndrome may be made worse by exposure to heat or cold and by emotional distress. Sometimes, this may include even such emotions as those brought on by listening to music." See also The Central Pain Syndrome Foundation and the CPS page at Pain World.

From my research, even though the name is often linked to a specific part of the brain, the thalamus may not be the only area of brain injury that can, again according to my reading, in 40-50% of strokes, result in this condition. According to a friend on Facebook (I have not tried this for myself yet), "Charting and coding errors do happen, especially with central pain syndrome since some medical folks are not aware of the medical terminology for this condition. The diagnostic code for Central Pain Syndrome is 338.0."

Here is my personal account of how this condition can impact me (keep reading past the TN information, though don't skip it as that will be a great point of reference for my CPS description): http://strokeofgrace.blogspot.com/2013/09/problem-of-pain.html. You will also find yet an additional CPS link listed there.


Additional links of Interest About Various Chronic Pain Conditions:

NINDS Central Pain Syndrome Information

What You Need to Know About Stroke-Induced Pain

Strokes Raise Risk of Chronic Pain

Brain Study to Predict Pain

Central Pain Syndrome

Dejerinne-Roussy Syndrome 

Post Stroke Pain

Neuropathic Pain

Still trying to figure out what's going on with my Trigeminal Nerve. TMJ we think, but the strokes messed up my ear, neck and shoulder too, so it's not just classic TMJ! My biggest help, thus far, has come through facial pain massage therapy. Update: I am still dealing with significant TMJ jaw pain, though this has recently been linked (by my neurologist) as also having atypical trigeminal nerve involvement/pain. A friend suggested The Facial Pain Association for support.