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!