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Monthly Archives: February 2013

Welcome to the Central Pain Syndrome Foundation website.


The CPSF was started by a highly committed group of CPS patients and their loved ones who are desperate to find a cure for this disabling neurological pain condition. We strive to provide up-to-date CPS information including causes, treatments, patient stories, website links and other important details to help you deal with CPS and remain hopeful while waiting for a cure.

We are incredibly pleased that the Huffington Post chose Central Pain Syndrome as a subject for a live webcast on Thursday February 28, 2013-National Rare Disease Day. We are indebted to Huffington Post for helping us reach a large number of people via the worldwide web. We will continue to strive to make CPS a well known disorder. Please support the Central Pain Syndrome Foundation.

Please support the CPS Foundation by contributing to our Founders Fund.

We’d love your feedback &/or comments. Please note that our website is a work in progress and is maintained primarily by CPS patients. Therefore, we ask for your patience in regards to correspondence and changes in website content.

Approximately how many people in the United States suffer from CPS?

No one knows how many exactly how many people in the US suffer from Central Pain Syndrome. Those numbers just aren’t kept, for a variety of reasons. . Sometimes, it is because  the CPS caused by another disease is referred to by the other disease, such as the CPS developed by Multiple Sclerosis sufferers: there, the pain is called “MS pain.” The  time-frame of the development of CPS is also highly variable, from the moment of injury, to as long as ten years after the first symptoms of  disease like MS or epilepsy.
Sometimes, the numbers are not kept because there has been no awareness  that CPS is a  potential development of another disease, such as shingles.  We know that closed head injuries and  botched surgical procedures can cause severe cases of CPS. Are the numbers for those cases not kept for legal reasons? Or simply because doctors are so unfamiliar with CPS symptoms? Central Pain Syndrome is not even listed in the neurological section of  Social Security Administration “Blue Book,” which is their standard for granting disability awards.
Since no one has any numbers, we did a bit more digging into approximately how many people in *just the United States* have CPS. These numbers are based on the estimations of sufferers/survivors in the United States, multiplied by the percentage estimated to have “neuropathic” pain based on Central Nervous System  injury and lesions. The very definition of CPS is that of a neuropathic pain caused by an injury or lesion on the CNS.  There are categories, such as closed head injuries and shingles,that  we *know* that they cause CPS. However, the development of CPS is not tracked, and so we can’t even begin to estimate the number of people who will develop CPS. However, with the fact that there are over 17 million head injuries occurring in the US *each year*, the potential number of CPS sufferers as the result of such occurrences could well be in t hew hundreds of thousands, if not a million.
Here are the numbers broken down by cause:
Stroke survivors                                                                 15% of 7,000,000 = 1,050,000 people
MS patients                                                                           30% of     400,000 =     120,000 people
Epilepsy                                                                                 30% of  3,000,000 =     900,000 people
Parkinson’s  Disease                                                          40% of         500,00 =     200,000 people
Cancer survivors                                                                 2% of  13,700,000 =    274, 000 people
Spinal cord injuries                                                          25% of        600,000 =     150,000 people
Syringeomyelia                                                                  50% of        250,000 =     125,000 people
Closed head injuries                                                          no numbers kept!
Shingles                                                                                  no numbers kept
Infections and illnesses                                                  no numbers kept
The estimated total CPS population in the US:     a  minimum of 2,819,000  people –

and probably *more than 3,000,000* CPS sufferers

You are not alone. You are merely unacknowledged.

The Central Pain Syndrome Foundation is determined to change the recognition of this disease across the entire country. Please help us out by spreading the word!


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