Happy Holidays! The Central Pain Syndrome Foundation gained 501c3 status in 2014, making your donations tax deductible.
Help us work toward our mission in 2015:
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!
YOU ARE NOT ALONE!
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.
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.
Louise Mowder’s Video: A Message From Hell. This video was the seed that sprouted into the CPS Foundation.
My 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.
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.
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!