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Donate to CPSF this holiday season!

Happy Holidays!  The Central Pain Syndrome Foundation gained 501c3 status in 2014, making your donations tax deductible.

Help us work toward our mission:

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.


Give a tax-deductible donation today!

The new & improved CPSF Website is in the works

In the very near future we will have an updated and multifunctional website that will knock your CPS socks off! Come back soon to see our improvements and THANKS AGAIN FOR SUPPORTING THE CPSF.

From Louise: I received this comment today on my personal blog, “The Fires of Hell”. It speaks for itself.

Hi all. I have searched for a place to discuss CPS with others who suffer, and wonder if I have found that place?

The story on this page about sleep made me stop and read deeply. Truly, I understand the problem. Had if for over two years and am ready to make it end by ending me.

Until today, I did not know of the terminology CPS, as I am told it is neuropathic pain. I will settle for CPS, as I can spell that much easier.

Today is my 58th birthday and I am so depressed I just want to cry out for help. I am divorced and very much without family or friends and am living in “the perfect storm” of hell. Three years ago, massive ischemic stroke. Amazingly did not die, or become totally disabled. Fact is, I lived a year, without medical assistance, no insurance, and had no idea how lucky I was at the time, to have only come away with a lot of trouble in the left leg, and essential loss of my left hand. I had a memorable day in the park, throwing a football around with my children a month after the stroke.

A year after the TBI, all hell began to rain down. The brain damage started to become very apparent, and I began to physically come apart. About that time I finally pushed through to a disability claim so I could see a doctor. She is a god incarnate with regards to her manner and willingness to believe me and help me. She is a neurologist, and after I explained my pain symptoms, and we worked on issues, she determined I have no neuropathy, but that the pain is all from the body attempting to repair all the blown up nerve connections, which has wiped out my entire left side, toe, to ear and all points in between.

The pain is like nothing I could ever imagine. I read others description and just nod my head, I have that, I have that, never had that, I am in big trouble since I am totally alone in all of this.

The brain damage is extensive and since it took out most of the right frontal lobe, my emotional controls are gone, and in addition to congetive, anlytical, short term memory, and host of other functions, depression is rampant between the depression from the brain damage and end of my normal life, when I add in the CPS, I spend a lot of time on the suicide hotline and am simply screaming for help and relief. None has appeared so my time on earth is very limited, since the only way to end the pain, is to end the life

Those of you who suffer this pain, my heart goes out to you. I would give you a warm, affectionate, caring hug if I did not know the pain would be unbearable. I cannot stand because of the pain in my feet. I cannot sit, because half of my rear end is on the left side :-) and is just hurts to much. I cannot lay down, because eventually I need to roll over and that means the left side is touched and so I can’t stand, sit, or lay down. I still live, but I don’t knowy why.

I was told two years ago, that I would try dozens of meds, but that in the end, the pain will never go away. She was correct, I have tried more than a dozen to no avail. Most of the “miracle” meds, lyrica, gabapentin, you name it, all bring me crippling side effects, from nausea, to uncontrollable thoughts of suicide and major attacks of vertigo that make life unlivable.

I do not know where to turn, as without the brain functions, its hard to deal with the pain, and the pain affects the brain via depression. I only receive SSI payments, and of course cannot work. I lost my home an all possessions, along with every penny, and lived for time on money from when I had to give away my home, but that is long gone and now I have not enough money to pay for a home, or any other necessities.

It is such a brutal existence. I see at least one doctor a day, every day for months. Mental doctors. pain doctors, physical therapists, you name one, I see them Pschologist, Psychiatrists, social workers, the whole gamut, but they can’t help until the pain goes away and its not going away as long as I am alive.

I guess no one gets what they truly hope for in life, but I never thought I would be the end at only 58 years of age. Worse than most all of it, I will never be able to afford to live, as SSI does not provide and I am locked into that pittance of a payment, every month, forever. IF I live four more years, I can “retire” at 62, but that is a miniscule increase of only a few hundred$ and will mean medicare instead of medicaid. I hate being on welfare, but medicaid pays for nearly everything. medicare will mean I need a supplement an that will take way any increase I might see from SSI to retirement.

IF you are in pain that makes you wish to die, I want to talk with you, because I am, and its incomprehensible to most people.

curse the luck, look at the economy that had me out of work when I had the stroke, which meant I cannot have SSDI. the difference in help financing would have let me keep my home, but dramatically, it means I am going to die. Its not the forum to complain about they system, but I am one who can understand chronic pain 24/7/365 My heart goes out to anyone there. The docs ask for a number from 1 to 10. I ten is being completly on fire, while being pummeled with a baseball bat ever minute, I am at 16, and most physicians think I am lying about that.

thanks for the space. You are in luck, I am worn out from typing with one hand, the right one doesn’t work, so I gotta move around, and sorry that I am too weary to proofread all of this.


John is the reason that we are creating this Foundation. Right now, there is NO one truly searching for a way to end John’s anguish. All of us who suffer from CPS know the utter extreme of pain that John is suffering, because we have felt it. Even if we do not feel it right now, we have the horrible knowledge of what it is. That knowledge, once learned, is impossible to forget, and impossible not to fear. Right now I – or you _ may be in a much better spot than John, a 5 or a 4 instead of a 10 – or a 16.But you know what a 10 and even a 16 feel like.

For me, the thought that I could someday end up as a 10 or a 16 is the ultimate goad towards making this organization work. That may sound selfish, but it is a selfishness I urge you all to adopt. Help the Central Pain Syndrome Foundation because you, too, may end up like John. You may – or someone you love dearly, who has a medical tragedy still in front of them – pay feel this freezing, burning, electrical lash of the neurological Devil, the lash that never flicks off of your skin, but burrows inside you and infiltrates all your muscles like an acid. So please forward this website, and its story, to anyone that you feel should understand more about Central Pain Syndrome, and our mission here.

If you wish to write to John individually, I urge you to do so. There may not be much that we can always do for one another, but the human hand of comfort is felt not only in person. It reaches through electronic written means as well. You can reach John at [email protected]

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!

The New CPS Foundation Website

Welcome to the new Central Pain Syndrome Foundation website. We are working to make our site a well-designed resource for CPS sufferers, supporters, the public, and medical professionals.

In keeping with the CPSF’s motto “You Are Not Alone” our front page features pictures and info about a few CPS sufferers and supporters. Here are links to each of their pages.

Now that we have a professional-looking website we will post here regularly. We will report on the progress of the CPS Foundation as we progress toward non-profit status. We will share medical information about CPS and pain. We will share the biographies, stories, poetry, videos, and art of CPS sufferers.

Please share this website and new posts as we add them.

We will make this website into an important resource in our battle to defeat the agony of Central Pain Syndrome.

If you suffer from Central Pain Syndrome or support a CPSer we would love to share your picture and story. Leave a comment on  this page.
CPS sufferer Scott Davis designed our logo. CPS supporter Mandy Dumins created most of the graphics.

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