YOU ARE NOT ALONE!
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.
The CPS Foundation’s theme for 2016 is ‘The Power of a 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!
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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.
A very important read about the CDC’s proposed guidelines for opioids and pain management. Thank you, Gail Driscoll Fiorini.
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.
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 firstname.lastname@example.org
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!
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.
The Central Pain Syndrome Foundation is a group of CPS patients and supporters who have come together to fight this crippling disease and the ignorance that surrounds it. Today, we ask for your assistance in making the CPS Foundation a leader in education, support and the research needed for an eventual cure.
Become a CPSF Founder by providing the seed money for our Federal non-profit designation costs.
Please contribute generously to the Central Pain Syndrome Foundation Founders Fund.
Hi, I’m Karen Davis, wife of CPS sufferer, mother of two, dental hygienist and secretary/treasurer of the CPS Foundation. My husband Scott was diagnosed almost ﬁve years ago, it was the result of a brain biopsy of what looked like a cyst/tumor near the thalamus. The biopsy came back benign but our lives were changed forever.
Scott was Mr. mountain man! He loved anything and everything outdoors, from skiing to backpacking you name it he did it. As a couple, we shared this love and went on many fun trips together, he even proposed on a ski trip. CPS has taken this from him and so much more. His life has to revolve around controlling his symptoms the best he can. He has to take medication every six hours, see’s an occupational therapist once a week and has MANY different doctors and appointments. It’s very hard to see the one you love in constant pain. I know he’s not the father he imagined himself to be but I try to think of it this way, maybe rather than horsing around like I know he wanted to, he’s teaching us more important values like resilience and strength of character.
For three and a half years I thought we were all alone. We went to the experts in the ﬁeld and were essentially told that Scott just needed to keep taking his meds, keep trying to work and trudge ahead. While that is ﬁne advice it didn’t give us any help on an emotional level. It was then that we found Louise Mowder’s blog, Scott ﬁnally convinced me to read it, and I literally could not believe there was someone who was using his exact same words! I immediately joined the FB group and was again amazed at how many people had my husband’s condition.
I know how hard this disease can be on the family. It is to promote public awareness and support for CPS sufferers and their families that I joined the CPSF. It is because I want you to know, YOU ARE NOT ALONE!