Let me introduce you to central pain syndrome, a.k.a. CPS. This is a real nasty side effect from strokes and brain injuries. There are other causes of CPS, but let me shed some insight as to my partnership with CPS. CPS does not have to begin immediately after a brain injury, but can come on at a later stage from the result.
I have had a bilateral stroke, which means I had been attacked from both sides. My CPS was mainly in the top of my numb foot. Now although my foot is numb from touch.
I had a feeling like someone driving a hot large nail through the top of my foot. It was so bad that I cried in anguish. My left shoulder was less painful, but felt like someone was nailing a picture in it. I am now on a great medication that has almost completely stopped this pain, so I am lucky. You need to know that this pain is real for the survivor.
You may not see it, but “Good grief, Charlie Brown,” it sure hurts.
Let’s turn to the National Institute of Neurological Disorders and Stroke under the National Institute of Health – www.ninds.nih.gov/disorders/central_pain/central_pain.htm
What is central pain syndrome?
Central pain syndrome 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. 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
According to the CPSA (Central Pain Syndrome Alliance) – www.centralpain.org – central pain syndrome can be a steady, sometimes deep burning, aching, cutting, tearing sensation CPS may be mixed with sudden, excruciating shots of pain. It is often mixed with other distracting sensations like cold, tingling, a “pins and needles” effect, a ballooning sensation, throbbing, and the feeling of a dental probe on a raw nerve.
Intense skin reactions can accompany these symptoms, such as burning, stretching, tightness, itching, or a crawling feeling that can be irritated by any light touch, sometimes just the feel of cloth on skin, which can make dressing an ordeal. Sometimes the touch of a loved one, or family member, in fun, or love, may often be a way to overwhelm the brain with the pain from CPS.
Sometimes the hands and feet are affected with a numbness that is painful, and does not offer any relief, only adding to the pain. It is often aggravated by temperature changes, particularly cold.
It can take months, even years, after a stroke to make it’s appearance, well after the patient thinks they are well on the road to recovery. CPS can often cause depression, anxiety, anger and frustration.
In some cases, when a person rates the pain as a 9 or 10 on a pain scale, and there seems to be no relief in sight, no hope or understanding with support, they may even come to feel that suicide is the only way out. In that way central pain syndrome can be a life-threatening condition.
We have defined the following things that can we call triggers to start or increase one’s sensations and pain levels: Movement, daily activity, ROM exercising; exposure to sun, cold, breezes, AC, barometer changes, weather. hot and cold, rain, snow; real pain or swelling, stress, anger, depression, touch from another person, blanket, tiredness. Sudden movements, ie yawning and other reflexive involuntary movements, like sneezing, being startled, fear and a vibration as riding in a car.
Synopsis
Knowledge is power. Most medications are ineffective for treatment of CPS. Therefore we must rely on our physicians. We as caregivers and patients must be aware this may not be in the survivor’s imagination. It was very real to me. No pain killers would touch the degree of pain I felt. I do believe the pain meds induced sleep which in turn assisted me.
Here are some more websites to assist you.
– www.wrongdiagnosis.com/c/central_pain_syndrome/intro.htm
– www.painfoundation.org/learn/library/pain-conditions/central-pain-syndrome
– www.strokeassociation.org/presenter.jhtml?identifier=3030470
– www.painonline.org/intro.htm
– Column by Chris DeWald
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