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Founders Fund Drive

What is Central Pain Syndrome (CPS)?

“I feel like I have just been pulled out of a meat grinder and every nerve in my body is exposed.”*

Central Pain Syndrome (CPS) is a neurological condition caused by damage to or dysfunction of the Central Nervous System (CNS), which includes the brain, brain stem and spinal cord.

“He feels like someone is spraying his thighs with a machine gun filled with razor blades while someone else takes a blowtorch to his legs.”

Among the many causes of CPS, the most common are:

  • Stroke
  • Multiple Sclerosis
  • Brain & spinal cord injuries
  • Amputations
  • Cancer
  • Tumors
  • Epilepsy
  • Shingles
  • Parkinson’s disease
  • Infections

“…feeling that you have just been struck by lightning and can feel the jagged strike as it hits your body or that there is a fire coal sitting in your body, red hot and as searing as a branding iron. Pain that stops you dead in your tracks and you scream in agony and no one can help, not even you.”

When damaged, the CNS can generate a number of miserable symptoms. Among the most devastating is Neurological pain. This mix of severe and agonizing pain signals is generally constant and has been characterized as the most distressing and intractable of pain. CPS can be unrelenting and worsen with time, creating physical & mental impairment, depression, despair and withdrawal from normal everyday activities.

“One jolt after the other, like an electrical shock applied through a knife cutting into the flesh, over and over again. Visualize a sadist with an electric carver, connected to the mains, slashing away, twisting and turning the infernal thing…” 

“I miss myself. I used to be very social, very busy—involved in several organizations, working, sewing, knitting, cooking, gardening. I miss me.”

“I sometimes wish I were dead when it seems that I am just getting sicker and sicker—but then I see something beautiful, or hear some music, or hug my son.”

“The dreams this week are killing me. People keep touching me and making me hurt and they won’t stop no matter how many times I tell them to. So frustrating to be hurting and crying even when I am getting some much needed sleep.”

“I often wish I could just die. Well, rather, I wish to end all the pain and the feeling that I’m nothing more than a lump on my bed and a burden to my loved ones… and at this point in time, death is the only escape from this illness and unrelenting pain.”

“When I feel like there is no reason left for me to be here and continue to endure this endless suffering, the sight or thought of [my family] reminds me that I do, indeed, still have value in this life… I actually AM still important, and even if only because of the love I have to offer and share with them, I’m not TRULY “useless” after all. I have their love to live for; something that too many people in this world do not have. They give my life meaning when I can’t for the life of me think of anything else to keep me here.”

*All quotes are from CPS sufferers or members of their families. Thanks to Painonline.org and Facebook Central Pain Syndrome Group for most of these quotes.

Imagine a disease that is living Hell: an agonizing mix of never-ending burning, electrical shocks, stabbing and crushing pain, from head to toe. Imagine watching a loved one—a parent, a spouse, a sibling, your child—struggling to cope with the fires of Hell for the rest of their life. Imagine that no medication can end it, unless you want to live in a drug-induced haze, unable to work, or even speak. Imagine that no surgery or treatment can cure it. Imagine suffering that disease’s cruel torture, every hour of every day, always getting a little worse, for the remainder of your natural life.

THIS HORRENDOUS DISEASE IS REAL.
IT IS CALLED CENTRAL PAIN SYNDROME (CPS)

In the U.S. alone, over 1.5 million people suffer from CPS.

Its damaging effects can be brought on by any number of conditions that cause Central Nervous System damage, such as Stroke, MS, spinal cord injuries and epilepsy.

Now imagine that there is no advocacy group that exists to educate the public and doctors about CPS. There is no fund-raising group that finds money to research. There is no support that helps relieve the burdens of the patients, caregivers or loved ones who are affected by it.

We will change that because we know how badly it needs to change.

We live it.

We are 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.

If you have been horrified by the truth about Central Pain Syndrome, please consider making a donation. If this is the first time that you have ever heard of Central Pain Syndrome, then consider making an even larger donation to raise awareness of CPS. Your donation will help inform even CPS sufferers about the cause of their agony, because there are hundreds of thousands of Americans who are unaware that their torment is caused by CPS. To make matters even more critical, far too many in the medical profession are just as unknowing about this disease, and even believe that their patients with CPS are crazy! CPS sufferers often cannot even qualify for disability payments, because CPS is so unknown to Federal and private bureaucracies.

Your donation will help to reveal the truth about Central Pain Syndrome to the entire American public.

Donate Generously to Save Millions from Living Hell

Please give so that we can reach out to and educate those sufferers and the doctors that they seek aid from. Your generous donations to the CPSF Founders Fund will be used to:

  • Make it possible for us to pay for incorporation and 501(c)(3) status;
  • Cover legal and accounting startup expenses
  • Support our startup team.

Please send a check made out to “Central Pain Syndrome Foundation” to:

Central Pain Syndrome Foundation,
655 Hermann Road,
North Brunswick, New Jersey 08902-2853

At this point in time, the CPSF has not received a 501C(3) designation. Contributions at this time are therefore NOT tax-deductible.

Until we are a registered nonprofit Paypal will not process donations for us.

Please buy CPS and CPS Foundation products at our online store. Inspirational, informational, funny t-shirts, mugs, etc.

We’ve set a modest goal of $20,000 for our Founders Fund Drive. Any additional money we raise will go toward building a stronger CPS Foundation.

We are serious about using your donations wisely. We are CPS sufferers and are desperate to find a cure.

Levels of Support
      • $1,000: Founding Patron
      • $100: Cornerstone Founder
      • $20: Pillar Founder
      • $1: Supporting Founder

“A Message from Hell” from CPSF Director Louise Mowder:

CPS Links

If you are a CPS suffer or caregiver please join these groups:

Please LIKE our Facebook CPSF Founders Fund page.

Contact for CPS & CPSF questions and media queries:centralpainsyndrome@gmail.com


More About Central Pain Syndrome

Because it is an “Invisible Disability” it can be terribly difficult for others to understand, including those in the medical profession.

“At times I experience a pain that feels like my brain is tearing apart, but the doctors keep telling me there are no nerves on my brain.”

Many CPS sufferers are forced to visit numerous physicians before finding one who is skilled in identifying this affliction. Even after diagnosis, finding effective treatment is tremendously difficult because there is no straightforward manner in which to combat the disease and sadly, there is NO CURE.

“There has been no pill or shot to numb my CPS that has worked and I am getting worse.”

Patients may undergo ineffective and painful procedures only to find out that nothing can be done to extinguish their pain and many are forced to live life in almost constant agony.

“CPS makes doing even little things torture. Getting things done is like running full tilt into an electric barbed wire fence over and over and over…”

Medical management can include drugs like anticonvulsants, antidepressants, narcotics, lidocaine, muscle relaxers and insomnia medications and various stress relieving techniques. These treatments are used in an attempt to calm the nervous system and dampen the continuous pain signals, but none of them are able to cure CPS.

“Too much pain to explain philosophically and it doesn’t really matter. What matters is that, as you so very well put it, ‘severe central pain is incompatible with maintenance of the true self.’ I mourn for the loss of what I thought was my true self.  Only by honoring and knowing that I do the best I can under the circumstances, can I stop the continual rape and revulsion of what I’ve physically become.”

Please send a check made out to “Central Pain Syndrome Foundation” to:

Central Pain Syndrome Foundation,
655 Hermann Road,
North Brunswick, New Jersey 08902-2853

At this point in time, the CPSF has not received a 501C(3) designation. Contributions at this time are therefore NOT tax-deductible.

Until we are a registered nonprofit Paypal will not process donations for us.

Please buy CPS and CPS Foundation products at our online storeInspirational, informational, funny t-shirts, mugs, etc.

FF contribution thermometer[4]

“The pain feels like raw flesh with vinegar poured over it”

“I also have forgotten what normal feels like except in dreams.”

“I have shooting electric pains that will actually force me to jump! Sometimes everything goes blank, and I just see white light at the same moment. And, MY GUT BURNS!!!!”

“I feel so isolated, at the moment every waking moment is torture. I can’t even remember what it means to be pain free, or what ‘normal’ pain feels like.”

“Stabbing, burning, shooting pains across my torso area from left to right. Sometimes a tight “banded up” feeling, like there is a tight rubber band across that area. It takes my breath away.”

“Overcoming brutal aversive conditioning to every action is a moment-to-moment challenge. The alternative is lying there helpless in a cauldron of endless pain.”

“Doctors give me no answers for my pain. I’m about to go crazy.”

“Sadly for me, some of my family have told many people my Central Pain Syndrome is ‘all in my head’. I got sick of this over the years and have stopped contact with these siblings as it just makes me feel so bad.”

“…it feels like what I would think major chemical burns would be like. I also tell people it feels like I’m constantly being stung with nettles. I don’t like to be touched in those areas and clothing can bother me sometimes even just the wind blowing when it’s really bad can bother me.”

“I love the beauty of spring, but I hate spring because I am in SO MUCH PAIN! There is just too much rain/weather changing going on.”

“How often do you wish you were dead? I personally wish my strokes would have just killed me than to continue with this misery. I just want to be normal again with a fully working pain free body.”

Please send a check made out to “Central Pain Syndrome Foundation” to

Central Pain Syndrome Foundation,
655 Hermann Road,
North Brunswick, New Jersey 08902-2853

At this point in time, the CPSF has not received a 501C(3) designation. Contributions at this time are therefore NOT tax-deductible.

Until we are a registered nonprofit Paypal will not process donations for us.


11 Comments

  1. [...] contribute generously to the Central Pain Syndrome Foundation Founders Fund. Share this:TwitterFacebookLike this:LikeBe the first to like this post. By Doug Sharp, on June 7, [...]

  2. [...] 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 [...]

  3. Sangeet says:

    I’m living with CPS for maybe 20 years now. The important thing is, I’m still living. Additional dx of PTSD, major depressive disorder with suicidal tendencies, multiple sclerosis, a-fib with rvr, hyperthyroid, etc always take a back seat to the central pain. I was discharged from hospital 1.1.2013 because I blew out a lung from the pain while in another hosp. PCA hydromorphone/dilaudid at .03ml per 10 min did absolutely nothing to alleviate the burn. I’m sorry for talking about it.

    • Zahira says:

      “話說回來 該是準備學習下廚的時候了” You really srpsuired me for I think that you should be a person who’s good at making your own dishes, even including desserts. I do love cooking. It’s a planned yet spontaneous process – you never know what you get until the dish is donw. What I hate most is handling all aftermaths (cleaning wok, bowls and plates……)

  4. Juliet Turner says:

    HI

    My father suffers from CPS and I am very keen to support research and to try and find some kind of effective treatment. I came on this site to donate, but I really feel you need to make it more clear as to what you intend to do with donations and lay out the costs clearly. For example, how much does it cost to get charitable status? And what, exactly, are you’re start-up teams going to provide? Are you going to focus more on research or pain management? Your aims are great, but HOW are you going to carry them out? Thank you.

  5. Jack says:

    Wow! Talk about a psonitg knocking my socks off!

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