Johns Hopkins Health Alert
Understanding Central Pain Syndrome
Post-stroke pain is difficult to treat and misdiagnosis is common. Can anything be done?If you’ve never heard of the central pain syndrome, you’re not alone. In fact, many doctors are unfamiliar with this syndrome, which can affect people who have had a stroke -- and can make their lives miserable.
The central pain syndrome is a neurological disorder that develops when the central nervous system (CNS) has been damaged; it can happen not only in individuals who’ve had a stroke but also in those with multiple sclerosis, epilepsy, Parkinson’s disease and other conditions involving the CNS (which includes the brain, brain stem and spinal cord).
Central pain syndrome can occur when a stroke injures the thalamus or parietal lobe -- the parts of the brain that process sensory stimuli. This damage causes sensory neurons in these areas of the brain to misfire, which can lead to disabling pain that is constant and anguishing, and may become more severe with time.
About 9 percent of people who have a stroke develop central pain syndrome (which is also called post-stroke pain syndrome). The pain can begin immediately afterward, but sometimes does not appear until weeks, months or even years later. So you and your doctor might not consider the pain to be a result of your stroke.
What’s the pain like? Some people describe the pain as burning or cutting. For others, the pain is an intense aching or throbbing pain or excruciating pins-and-needles sensations. Particularly distressing is that the pain does not affect a small area of the body; instead, it is often head to-toe or occurs in large portions of the body. If that weren’t enough, a light touch can elicit pain; so can clothing or a blanket brushing up against the skin. Even a change in room or outdoor temperature (or a rise or fall in barometric pressure) can intensify the discomfort. Emotions can increase the pain as well.
Because many doctors are unfamiliar with the central pain syndrome, misdiagnosis is common. Some people are told that they’re imagining it or making up the excruciating pain, or that the pain can’t possibly be as bad as they say it is. These individuals may be told that they need to see a mental health professional like a psychiatrist.
Getting help for your pain. If you’ve had a stroke, and are coping with severe pain, see your family doctor or a neurologist. If the doctor is unable to provide the pain relief you need, or raises a skeptical eyebrow over whether you’re actually feeling pain, ask for a referral to a pain management clinic that specializes in chronic, difficult-to-treat pain.
Posted in Hypertension and Stroke on June 26, 2007
Reviewed June 2011
Medical Disclaimer: This information is not intended to substitute for the advice of a physician. Click here for additional information: Johns Hopkins Health Alerts Disclaimer
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The author greatly understated the lack of understanding, by physicians to pain and to anything more complex than the common cold. Second, after 60 years of dealing with this profession, I would swear they have a single set of standard issue flip charts, just like off shore support people, and chart #2 simply states; "Go see a psychiatrist.".
I have been misdiagnosed with text book symptoms of gout, kidney stones, and most recently central pain syndrome. You guessed it; "Go see a psychiatrist.", every single time. The most constructive advice I can add, already implied in the article, is do not let that goof in a white coat bully you into submission with the above stupid and moronic brush off phrase. Personally, I have come to rely on sites such as this to do my research ahead of doctor visits. When confronted with the above kinds of brush offs, I go on the offensive and begin interrogating my doctor with information and demand that he/she demonstrate a minimum level of competence by responding. I usually get more respect as a patient and our follow on interactions become more constructive. Sometimes I have to find a new doctor. But, that probably is for the best.
Secondly, if you suspect that you may have Central Pain Syndrome, do bring that up with your doctors and explain why you believe such. Then, from my experience, I would say you ultimately will have to end up at a large medical institution, such as John Hopkins, to start getting constructive therapy.
Posted by: glaird | November 5, 2011 12:34 PM