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

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

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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!


  1. Anonymous says:

    I couldn’t agree with you more…

  2. mary says:

    Finding true numbers from the various cps conditions is so hard even now but slowly see improvments. When i first bgan thi cps
    education journey the going number for strokees was 2% and now its knon t be in the 15-20% range. But still too any use other terms then cen tral pain… until all condition use central pain….rare….it is NOT.

  3. louisemowder says:

    I was very heartened to see Dr Tennant use the same analogy for the diagnosis of Central Pain Syndrome that I do: cancer. He described it in our joint interview as a “cancer of the nervous system,” that spreads in much the same way. Just as cancer can begin in one organ and progress to another, the pain that is CPS – no matter what its proximal cause – actually spreads through the nervous system .

    When you realize that all of these various illnesses and injuries *cause* CPS, you see that it is much, much bigger than “Post Thalamic Pain Syndrome.” You are correct that It is NOT a rare disease. It is a *rarely recognized* disease.

  4. Jeff says:

    Being a neurological cripple is the worst pain ever.

  5. You can if you want to,that’s your choice.

  6. Dhuds says:

    Hello! I am new to this whole community. My mother was recently diagnosed with this disease after being misdiagnosed with neuropathy. She was given many medications because of the neuropathy and none of them worked. We live in Baltimore MD where we have one of the best hospitals in the country (Johns Hopkins University) and they could not figure out what was wrong or even how to treat her for months. Finally, their best neurologist discovered that she had CPS and told her about a surgery for a brain stimulater but said that he does not perform those surgeries any more because of the small success rate. He referred her to a doctor in Cleveland Ohio who still performs the surgery and that doctor took her case.

    I am coming to this community to ask questions and find out more information. My question to you all is whether or not any of you have had any success with this surgery or know someone who has?!?! It is a frightening thing to think that my mom may get brain surgery for nothing because the success rate is almost unmentionable.

    She is set on getting this surgery no matter what because the pain is so great. Any advice or assistance is well appreciated. I can be reached via my personal email address at dhuds87@gmail.com. Thank you so much!

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