Welcome to the Central Pain Syndrome Foundation website.


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.


5 thoughts on “Welcome to the Central Pain Syndrome Foundation website.”

  1. Hi, I am thankful to find this info. In 2005 I was in an accident resulting in TBI the injury my skull was fractured and my right orbit was shattered, pieces of my orbit bone was in my right frotnal lob. As time went on I suffered with confused memory, headaches that only sleep could relieve.I could not handle much noise and being in public or family gatherings it felt like confusion and torment. I went through rage and anger that ran though every part of my body. Then came the next form of pain ,insane anxiety , panic attacks, shame and suicide thoughts. I started self medicating with alcohol that 2007 and lasted 2009, Wich was out of my character.
    My husband of 32 years divored me in. Oct 2011. And in Nov. 2011 our 30 year old son died accidentally. I have seen many Doctors and therapists since 2005. I suffer from a TBI, PTSD, Since me son and my divorce. I suffer from pain wich is daily it feels as though I am sun burt ,being shock, and pins and needles in my parts of my body!!
    It truly disabling and. I feel hepless and hopless……………

    1. Going through similar pain with Parkinson’s at 50. Pain hurts. Keep pushing forward. There is a new type of pain med in phase 3 clinical trials. Might be be a first in class drug that actually relieves tormenting chronic pain. Hang in there

  2. Your site contains NOTHING about central post- stroke pain which comes from a hit to the part of the BRAIN which helps communicate pain and only pain OF ALL KINDS to affected tissues. READER BE AWARE! Do not fall for generic chronic pain information. It’s ok, but FAR LESS than we need.
    CPSP is UNIQUE in the neuropathic pain community. See researchers Canavero and Bonacazi for publish articles and their BOOK about the condition.

  3. Doug, I want to send YOU a copy of my ‘Central Pain Syndrome’ book. How can I do that? I can send eBook via e-mail IF I had an e-mail address. Sending you a printed copy would require a mailing address. OK? Thanks.

  4. I’ve only just found this site after being diagnosed with ‘thalamic pain’ and seeking all the information I can get. I t think Caroline is right that we need more specific information on central-post-stroke pain, which can sometimes be the first and only symptom of there having been a stroke at all (which was my case.

Leave a Reply

Fill in your details below or click an icon to log in:

WordPress.com Logo

You are commenting using your WordPress.com account. Log Out /  Change )

Google photo

You are commenting using your Google account. Log Out /  Change )

Twitter picture

You are commenting using your Twitter account. Log Out /  Change )

Facebook photo

You are commenting using your Facebook account. Log Out /  Change )

Connecting to %s