Helping Others Understand: Post-Stroke Central Pain Fact Sheet

It can sometimes be hard for family and friends to recognize how much post-stroke central pain may be affecting a survivor. We’ve created a quick-reference sheet that you can share with family and friends to help them better understand. Download a PDF of the fact sheet.  See the full story: Helping Others Understand: Post-Stroke Central Pain

Fact sheet transcript:

What You Need to Know about Post-Stroke Central Pain Syndrome (CPS)

• This pain is described as burning pain or hypersensitivity or pins and needles, typically on the side of the body that is numb.
• The pain never goes away, but it can intensify.
• CPS is unlike the tissue and peripheral nervous system pain that most people have experienced. CPS is the result of injury to the brain itself.
• CPS does not respond to pain-killers. This may be because the nerve pathway that regulates pain has been destroyed.
• Cold temperature may make it worse, as may movement, fabric on the skin or even the wind.
• CPS sufferers may fear being stigmatized as someone who is exaggerating their condition.
• Survivors with CPS may withdraw from family and friends to guard against unpredictable stimulation that may intensify the pain.
• Believe your survivor, even though you may be unable to comprehend their experience: CPS is not a psychological condition.
• It is not unusual for CPS and depression to co-occur. Treating the depression can improve the quality of life.
• Listen to your survivor without judgement and believe what they’re saying about how they are experiencing their pain.
• Chronic pain counseling for the survivor and for those living with and caring for them, may be helpful. Understanding the difference between adaptive and maladaptive coping is particularly important.
• It’s helpful for those around the survivor to educate themselves about CPS, chronic pain and the interventions and strategies to help patients cope with it.
• Do not focus on a magic cure or the idea of someday being 100 percent pain free.
• Encourage your survivor to set reasonable goals.