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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.

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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.

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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.

CPSsufferer

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.

CPSsufferer

Julie Haupt

Julie Haupt

My name is Julie, I’m 33, and I’ve had Central Pain for 6 years. I have severe burning and cold, unrelenting pain throughout both sides of my body. The worst part is my hands. It feels like i’m on fire and also freezing cold.

I had a stroke at 26, a blood clot in my cerebellum, right in the middle of the back of my head, by my spine. Four months later the tingling in my hands started, I also had tightness in my arms. The pain changed to a burning, spread everywhere and worsened. The only place i don’t feel it very much is my lower back and buttocks.

The only thing that has helped me so far is opiates, I’ve tried every non-narcotic. I can’t be on them forever so i’m hoping to get a spinal cord stimulator or something else. Everyday is a struggle not to go crazy, I try to stay distracted with tv and search for help and solutions.

Thank you for this group. It’s nice to hear other peoples experiences and what they’ve tried. It’s nice not to be alone, although I’d never wish this on any person or animal. No one should live like this and I hope there’s a breakthrough soon. Thank you for giving me a voice and help.

CPSsufferer

Nathan Noble

Nathan Noble

Central Pain began at birth.

Cause: Mastocytosis/ Mast Cell Dysfunction ( I have an even more rare variant of this Rare Disease- The Few Immunologist that study and Dx it can’t agree on a name). Also, too many Orthopedic injuries to list and A-Typical Trigeminal Neuralgia that began with a Dislocated & Broken jaw in 89′ and subsequent Oral Surgeries through 94′.

Personal note: Adrenalin Junkie, via Snow & Wake Boarding, Jet Skis (Standup-real type), Dirt Bike & Mt. Bike Riding, Snowshoeing & Hiking are my best “Pain Killers”. RE: Endorphins, Dopamine, etc. Dilaudid used so that I can partake in these activities- need help getting started before those Divine Chemicals begin to flow!