As defined by the National Institute of Neurological Disorders and Stroke, CPS is “a neurological condition caused by damage to or dysfunction of the central nervous system (CNS), which includes the brain, brainstem, and spinal cord…The character of the pain associated with this syndrome differs widely among individuals partly because of the variety of potential causes. Central pain syndrome may affect a large portion of the body or may be more restricted to specific areas, such as hands or feet. The extent of pain is usually related to the cause of the CNS injury or damage. Pain is typically constant, may be moderate to severe in intensity, and is often made worse by touch, movement, emotions, and temperature changes, usually cold temperatures. Individuals experience one or more types of pain sensations, the most prominent being burning. Mingled with the burning may be sensations of ‘pins and needles;’ pressing, lacerating, or aching pain; and brief, intolerable bursts of sharp pain similar to the pain caused by a dental probe on an exposed nerve. Individuals may have numbness in the areas affected by the pain. The burning and loss of touch sensations are usually most severe on the distant parts of the body, such as the feet or hands. Central pain syndrome often begins shortly after the causative injury or damage, but may be delayed by months or even years, especially if it is related to post-stroke pain.”
Treatment for CPS includes tricyclic anti-depressants such as amitriptyline and nortriptyline, or anticonvulsants such as lamotrigine. Antiarrhythmics (mexiletine) and local anesthetics such as lidocaine can be effective. Many individuals with CPS find that keeping stress levels low is helpful in managing pain; they use techniques such as mindfulness meditation to do so.
Since CPS is not uncommon among our members, support can be found in our Facebook groups and video conference support groups. Additionally, the American Chronic Pain Association and the Central Pain Syndrome Alliance’s Yahoo group are patient resources specific to pain.
The impact on lives is dramatic. Our members have participated in raising awareness. Virginia Peters was featured in an article, “When the Pain Never Goes Away” in Stroke Connection on thalamic pain. Patti Gilstrap has produced a series of awareness videos that can be found on her YouTube channel MrsPattiG1. She also has written Central Pain Syndrome: Lives Turned Upside Down which was published on the Rare Disease Day website.
Canavero S, Bonicalzi V. Pain Myths and the Genesis of Central Pain. Pain Med. 2014 Jul 8. doi: 10.1111/pme.12509. [Epub ahead of print] PMID: 25040097
Canavero S, Bonicalzi V. Central pain syndrome: elucidation of genesis and treatment. Expert Rev Neurother. 2007;7:1485-1497.
Canavero S, Bonicalzi V. Extradural cortical stimulation for central pain. Acta Neurochir Suppl. 2007;97:27-36.