Central Pain Syndrome (CPS) is
a neurological disorder consisting of agonizing pain signals of many differing types at once:

  • Burning
  • Freezing
  • Shocking
  • Aching
  • Crushing
  • Spasticity

It has been characterized as the worst pain known to man.
It is caused by damage to or injury of the Central Nervous System (CNS), which includes the brain, brainstem and spinal cord; its causes include but are not limited to:

  • Stroke
  • MS
  • Epilepsy
  • Head & spinal cord injuries
  • Aneurysms
  • Tumors
  • Infections

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.

Website Categories

Welcome to the Central Pain Syndrome Foundation website.

~WE ARE HERE TO HELP YOU~

Welcome to the 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.

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.

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

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 appreciate them helping us reach more people via the worldwide web. We will continue to strive to make CPS a well known disorder.

Now that we have a professional-looking website, we will report on the progress of the CPS Foundation and share medical information about CPS and pain with you. We will also share the biographies, stories, poetry, videos, and art of CPS sufferers.

We will make this website into an important resource in our battle to defeat the agony of Central Pain Syndrome. Please share our website and posts with your friends and family.

Visit the CPSF Store!

You are not alone. Show your support. Shop the CPSF web store!  http://www.zazzle.com/cpsfoundation
central_pain_syndrome_survivor_t_shirt-r3946ee7575e6466c94f595807bbb1704_jf4s8_630

The Power of a Diagnosis

The CPS Foundation’s theme for 2016 is ‘The Power of a Diagnosis’

CPSF-The-Power-Of-Diagnosis

We will be introducing topics to enhance conversation on this page and the CPS group page. https://www.facebook.com/groups/73987647329/

Please feel free to tell us what you think of this year’s theme!

Donate Today

Help us spread the word!
Share this on Facebook

DONATE to CPSF

Give a tax-deductible donation today!

 

The Central Pain Syndrome Foundation gained 501c3 status in 2015, 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.

CDC’s proposed guidelines for opioids and pain management

A very important read about the CDC’s proposed guidelines for opioids and pain management. Thank you, Gail Driscoll Fiorini.

Screen Shot 2016-02-18 at 7.43.57 PM

 

http://journals.lww.com/ajnonline/Fulltext/2016/01000/I_m_Worried_About_People_in_Pain.2.aspx

I received this comment 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.

Read more here

 

 

John is one of the many reasons 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 ewsnet@gmail.com

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!

Welcome to the Central Pain Syndrome Foundation Online Home

Louise Mowder, Director of the Central Pain Syndrome Foundation, inspired the formation of the CPSF with her Message from Hell video.

We will use this website to:

  • report on the growth of the Central Pain Syndrome Foundation
  • ask for your help
  • reach out to the CPS community
  • educate medical professionals, CPS patients, and the public
  • report on advances in CPS research and treatment

Please subscribe to our website and spread the world about CPS and the Central Pain Syndrome Foundation.

Louise Mowder

Louise Mowder

Louise Mowder’s Blog: The Fires of Hell

Louise Mowder’s Video: A Message From Hell. This video was the seed that sprouted into the CPS Foundation.

 

Fiona Morrison-Bradbury

Fiona BradburyMy stroke was a thalamic stroke I experienced in my sleep with no previous heath issues and I was not a smoker nor obese. I was 45 years of age and had an 11 year old (who called 911) and a 14 year old. They never discovered the cause of this stroke.

The pain syndrome was diagnosed within 6 months. I thought it was another stroke.

This is a nasty syndrome that makes life difficult to live and to make plans as it changes every day, sometimes every hour. We need to find a cure or at least a reasonable pain management strategy that doesn’t remove us from our lives and families. And, we need people to understand that just because you can’t see a disability, it doesn’t mean it’s not real.

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 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.

Like the CPSF on Facebook

Enter your email address to follow this blog and receive notifications of new posts by email.

Archives

Follow

Get every new post delivered to your Inbox.

Join 151 other followers