What is Central Pain Syndrome?

“What is Central Pain Syndrome?”
Central Pain Syndrome is a lifelong neurological disease of the Central Nervous System, which causes constant, unending, agonizing pain signals of all somatic types simultaneously. It is caused by lesions on the somatic pathways in the brain, brainstem, and/or spinal cord, which can be the result of disease or injury. There is presently no cure, and any treatments are few and of limited efficacy.

The current definition of Central Pain Syndrome given in the Introduction to the textbook “Central Pain Syndrome: Pathophysiology, diagnosis and management,” by Canavero and Bonicalzi (2 nd Edition, 2013) is: Spontaneous and/or evoked, anomalous, painful or non-painful, sensations projected in a body area congruent with a clearly imaged lesion impairing – transitorily or permanently – the function of the spinothalamoparietal thermoalgesic pathway.

Central Pain Syndrome as defined above has an estimated 3 million sufferers in the United States, with many, if not most, of them undiagnosed and treated ineffectively. Some of the primary causes of CPS lesions include:

  • Stroke
  • MS
  • Epilepsy
  • Head and Spinal Cord Injuries
  • Surgery on the brain and spinal cord
  • Aneurysms
  • Tumors
  • Aneurysms
  • Tumors
  • Infections
  • Closed Head Injuries
  • Shingles

These diseases or injuries leave lesions which affect the somatic pathways of the Central Nervous System. CPS pain is perceived in the areas of the body of which their pain signals are transmitted along these injured pathways. The types of pain perceived are extreme in effect, and may be described as:

  • Burning
  • Freezing
  • Shocking
  • Aching
  • Crushing
  • Stabbing/Cutting
  • Spasticity and Cramping

Depending on the size and location(s) of the CPS-responsible lesions, these pain sensations may be located in one discrete area, such as a hand or foot, or encompass the entire body. Over time, the pain sensations involve larger and larger areas of the body as “kindling” damages ever greater numbers of neurons.

It is estimated that close to 3 million people in the U.S. suffer from CPS. It is aggressive, never ending and disabling, making normal life immensely painful and incredibly difficult.

The medications and treatments used to fight it are very limited and highly ineffective. There is presently no cure.

Which is why the Central Pain Syndrome Foundation was founded and organized. The mission of the Central Pain Syndrome Foundation is:

  • To increase understanding of Central Pain Syndrome, its symptoms, causes, and treatments;
  • To help ensure quality medical care for those suffering from CPS;
  • To energize science to find a better treatments, and eventually a cure for the disease;
  • To improve the lives of patients, their caregivers and families;
  • To create a network of people dedicated to achieving these goals

About The Author:  Lisa is currently a Power of Pain Foundation Delegate and the Vice President of the Central Pain Syndrome Foundation; CPSFoundation . She has 20+ years of experience as a Paralegal Specialist in criminal law. It was while working in this position she suffered a stroke causing Central Pain Syndrome along with Grave’s Disease, post cancer and thyroidectomy. As a cancer and stroke survivor since 2002, she believes it is important to spread awareness and obtain research for Central Pain Syndrome to help others and their families. Lisa is also a published author of: At The End of The Day .

Cites:

  • Ninds.gov
  • Rarediseases.org
  • Webmd.com
  • Painonline.org

7 thoughts on “What is Central Pain Syndrome?

  1. I was diagnosed in 2004 with CPS and neuropathy by a renowned pain specialist doctor a UPenn University, 3 years after I become ill. When I went to a pain management doctor afterwards for treatment they told me CPS was the same as Fibromyalgia and ignored the neuropathy DX. And because I didn’t know better I believed the doctor, and never pursued treatment for CPS though I always shared my medical records and my visit to UPenn with new doctors.

    Back when I first became ill in 2001 I spent every waking moment either researching my illness or in doctors offices in hopes of cures or good treatments without success. Because I didn’t have health insurance I spent my life savings, sold my home, moved to a warmer climate leaving my family and a place I loved all in hopes of improving my health. All that money and effort did not produce remarkable results. I finally gave up and now I only take pain medicine and live my life as best I can as is my choice.

    I prefer this to spending all my time in doctor offices chasing after a dream. I’m glad for those who find help but it is extremely difficult in this negative pain environment to find doctors who will help. Heck right when I moved to the state I live in now they changed the laws so that PCPs could not prescribe pain medicines without jumping through hoops-paying high fees and making physical changes to their offices, implementing more tests, and so off course they abandoned their patients and those same people scrambled to find pain management doctors. In other words, I’m thankful simply for pain management. Though of course I fear losing this with the new CDC guidelines.

    I only just discovered this site and will consider learning more.

    Thank you for listening.
    Valiant

    • Dear Valiant,
      I have CPS. I was looking for expanded pain treatment at UPenn now when I saw your post and this site.

      CPS and life are very personal but from what you have said, I may be able to appreciate your experience. I have had many of the same pressures due to CPS while dealing with CPS as well. I was forced into places (while both insured and working and unemployed) that I could not escape at times and underwent them when I could not provide reasons to myself for what was taking place and no one else could either. Numerous volatile pain issues often in the winter, and the feeling like a harness is pulling you to the ground the rest of the time are a couple of the cumulatively devastating changes to typical life definitions.

      I currently see a general neurologist and a physical med doc. among others. Prior to seeing him and another doc., the CPS went w/o a a Dx for 10yrs? and it’s cause, Hemicrania Continua went undiagnosed and without any treatment for 15yrs. H/C is a rare/less common constant headache unresponsive to all typical headache meds.

      To those with CPS and those effected by the failure of prompt diagnosis; the odds of a Dr. Dx’ing something that they don’t know exists is 0%. Therefore, they have to come up with something else to which yours must be made to conform to. Dr’s will rarely arrive at their own ignorance to any Dx, Some regard themselves as not all knowing and will hunt it down with you. They are very rare people and seemingly impossible to reach when you need them.. NORD lists some 6000+ rare diseases. Treatment is another set of issues and CPS needs to be treated aggressively if needed and with constancy.

      So, may I ask who you were treated by there in 2004? This is a very important question for me as I was looking a Dr (that one) while finding this site. CPS continues to cause me severe pain. As you know, finding the right people at the right time make the difference.

      I have to move to warmer place too. Please share any state(s), places, or temperature ranges you’ve been to or lived that you liked the best? If you only have 30 seconds, forget the climate. The Dr. is the gold mine. I would be eternally grateful

      I hope you continue to do well.
      My sincere thanks – Ken

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  3. This has been an incredibly wonderful post with lots of helpful information i can use to help talk to my friends, family and doctor.

    Many thanks for providing this info.

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  5. Its like you read my mind! You seem too know a lot about this, like you wrote the book in it or something. An excellent read. I’ll definitely be back.


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