Welcome to our blog! I originally started this blog in November 2010 just prior to having a major brain surgery to remove a large bleeding cavernous angioma from a deep part of my brain. You can best understand the gravity of our experience by reading the first several entries.(Nov 2010-Dec 2010) I wrote the first one and my sweet, adoring husband, John, wrote the next several (while I was too sick to do much of anything) that documented surgery, immediate recovery, and our reaction to the surgery complication (stroke)that was revealed 2 days after surgery. This recovery process has been difficult but we are making it. We appreciate all the kind words of encouragement we have received and we would like to thank everyone that has participated in helping us along this difficult journey. Also, if you have any questions about my personal experience, please leave them as a comment or contact me directly at thankfulforeveryday@yahoo.com and I will respond although I am not a doctor and this is not a replacement for medical care or advise. Please ask a real professional, or probably several. :) I hope to be able to help at least one person along the challenging road of brain surgery and recovery.

Wednesday, August 7, 2013

Cental Pain Syndrome resources

I consider myself very lucky to not be affected by the "pain monster" that is CPS. One of my dear friends is afflicted with this monster and she has put together a number of resources that she has come across. I am passing them along to you in hopes that if you have CPS, you can connect with others and benefit from this list Patti has assembled. If you know of any additional resources, please post them in the comments so that others may benefit from your wisdom.
CENTRAL PAIN SYNDROME (CPS) RESOURCES

Patients Like Me: Central Pain Syndrome
http://www.patientslikeme.com/condition ... n-syndrome

 CPS UK (Central Pain Syndrome) Blog
http://centralpainsyndromeblog.wordpress.com/

Weeks after Stroke, Some Patients Develop Chronic Debilitating Pain
http://oc1dean.blogspot.com/2013/05/weeks-after-stroke-some-patients.html

Central Pain Syndrome Alliance
http://www.centralpain.org/

 Fluoxetine Reduces Central Post-Stroke Pain: A Comparitive Pilot Study 
http://en.cnki.com.cn/Article_en/CJFDTOTAL-ZTYZ200405006.htm


I Have Central Pain Syndrome
http://www.experienceproject.com/groups ... rome/97371

 Central Pain / Facebook
https://www.facebook.com/pages/Central- ... &filter=12

 The Fires of Hell Blog
http://thefiresofhelldotwordpressdotcom ... com/about/

 Central Pain Syndrome Foundation
http://centralpainsyndromefoundation.com/

 Central Pain Foundation / Facebook
https://www.facebook.com/CentralPainSyndromeFoundation

 What Central Pain Syndrome is Like
http://www.youtube.com/watch?v=vEV6FompwZg

 CPS Sufferers Not Alone
http://www.youtube.com/watch?v=Y1TRXgW5jcw

 Central Pain Syndrome "Message from Hell #1: How Are You?"
http://www.youtube.com/watch?v=h54Q5AQJ-Ss

 A Day in the Life of Central Pain Syndrome
http://www.youtube.com/watch?v=8ed6hazqNYU

 Central Pain Syndrome: lives in constant pain
http://www.youtube.com/watch?v=NIG0KywCwIY

 Central Pain Syndrome: I am one among 100,000
http://www.youtube.com/watch?v=JD26ZAYh9Ck

 Central Pain Syndrome: lifestyle changes
http://www.youtube.com/watch?v=aJQkfUrm ... tube_gdata

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12 comments:

  1. oc1deanAugust 7, 2013 at 12:10 PM

    I don't have this so I have very little on it;
    FLUOXETINE REDUCES CENTRAL POST-STROKE PAIN:A COMPARATIVE PILOTSTUDY
    http://en.cnki.com.cn/Article_en/CJFDTOTAL-ZTYZ200405006.htm

    ReplyDelete
    Replies
    1. oc1deanAugust 7, 2013 at 12:13 PM

      And one more;
      Weeks After Stroke, Some Patients Develop Chronic, Debilitating Pain
      http://oc1dean.blogspot.com/2013/05/weeks-after-stroke-some-patients.html

      Delete
    2. Elizabeth, John, Jack, and LukeAugust 7, 2013 at 12:26 PM

      Thanks Dean! When I get a chance, I will add them to the list....if you don't mind.

      Delete
    3. oc1deanAugust 7, 2013 at 1:27 PM

      I think the only source of information is patients so we have to take control, pass them on.

      Delete
    4. Elizabeth, John, Jack, and LukeAugust 7, 2013 at 3:06 PM

      Gotta love that the brain injured survivors are primarily the ones solving our problems and spreading awareness. Sad but true!!!

      Delete
  2. AnonymousAugust 15, 2013 at 10:36 AM

    Thanks for posting these, Elizabeth!
    For the sake of awareness, I was pleased to have my CPS story posted @ http://americannewsreport.com/nationalpainreport/my-story-living-with-central-pain-syndrome-8821030.html.

    ReplyDelete
    Replies
    1. Elizabeth, John, Jack, and LukeAugust 30, 2013 at 10:51 PM

      The link you provided doesn't work. I was going to add your story to the list but it says, page not found. Sorry!

      Delete
  3. AmyAugust 25, 2013 at 6:45 AM

    Aww, I'm very glad I have no pain either, it's great that you posted those links.

    ReplyDelete
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