Messages from Hell: Videos from CPS Survivors

We encourage CPS sufferers to make their own “Message from Hell” videos. We will post them on this page.

This video by Louise Mowder was our inspiration for forming the Central Pain Syndrome Foundation. Louise is now the Director of the CPS Foundation.

Doug Sharp explores what the question “How Are You?” means to a CPS survivor:

No CPS sufferer wants to look inward to answer the dreadful question “How Am I?” This video contains raw, graphic descriptions of one CPS sufferer’s agony:


18 thoughts on “Messages from Hell: Videos from CPS Survivors”

  1. Boy, Doug, this really makes me sad. I wish I had the power to help. I have a dear friend that has this and somehow, she has held on to her funny side. She was an artist and she can’t use the painting hand anymore due to this cps on her entire right side. It even goes right in half of the right eye and causes eye sight loss. I love her and wish I could help, but I give her my love and conversation about other things and never ask her “HOW ARE YOU?”

  2. Dear Doug—I have no words that would be appropriate or proportionate to what you and others with CPS endure, but you do have my heart.

    1. Thank you so much for this contribution to CPS awareness. Beautifully written and edited. Tremendously heartfelt and affecting. We will use this video to spread the word.

      At the CPS Foundation we are trying to get a census of CPS sufferers in the US and have arrived at a much higher number that 100,000–nearer 3 million. We think that because CPS is such an unknown syndrome in the medical community that we are woefully undercounted. Take a look at Louise’s latest blog post on the subject

      Thanks again for your powerful contribution to the cause of defeating CPS. And best wishes on your struggle with CPS.

      You are not alone.

  3. Thanks, Doug.
    I’ve no doubt the number of those of us affected is w-a-y higher than quoted in my vid, but was using the quote in recent NINDS literature.
    Keep up the great work – the site is looking great! 🙂

  4. Louise,
    I cannot hear you.Please repost the video and speak louder. I have a mac and the volume is all the way up….. I will be posting what me and my daughter experienced after she got CPS and suffered. Please repost. Thankyou!

    1. Hi I’m new to all this I’m in a lot of pain I’m 41 years old and I have central nerve damage . I had a brain aneurysm and do to that a few days I had a stroke . Feel like Doug i dont no how much longer i can live in this pain. I wish i could talk to somebody on the phone that has this pain like me feel so alone. there’s so much I want to say but its hard for me because I’m doing all of this from my phone . I would even post my phone number to just talk to somebody that has it .can somebody tell me what website I can go on to talk to somebody live to help . I live in New Jersey . I just want to die pain so bad. I dont want to leave my little girl. I cant huge her so painful.god can any one that has cps talk to me?

  5. Dr. Steve,Great video explanation.Any time I see senoome older who is hunched over, especially if they are using a walker, I immediately correct my posture.With your coaching course, I intend to use correct posture until I no longer have to remind myself to do so I have already seen evidence of progress with just the thought of pushing away .Looking forward to the next video.

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