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About The Fires Of Hell

A blog about Central Pain Syndrome, commonly referred to as CPS.  “Central Pain Syndrome” is an umbrella term, much like “cancer” for a disease that expresses itself a bit differently in each individual. Like cancer, the treatments and prognoses depend on the location of the CNS lesion, the reasons the lesion(s) occurred, and the length of time you have been suffering. CPS encompasses subdivisions such as Post-Thalamic Stroke Disorder, Multiple Sclerosis pain, pain from spinal injuries, pain caused by closed-head injuries, epilepsy pain, pain caused by surgery on the CNS, Chiari malformation pain,  and even pain caused by shingles. If there is a way for you to damage your Central Nervous System – brain, brain stem, and spinal cord – there is a possibility of ending up with CPS.

I acquired Brain CPS (the more treatable form) as the result of a stroke, so my personal treatments may not work for you. But we who suffer this disease all share the same pain and, often, the same despair.  So this is also a personal journal of my own attempts to understand and ameliorate a life lived in the constant burning of the fires of Hell.

 

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2 Comments leave one →
  1. karen permalink
    January 16, 2012 9:22 PM

    Louise, hi my name is Karen Davis, three and a half years ago my husband Scott was diagnosed with Thalamic pain syndrome. We have felt so alone and helpless, we have tried every treatment under the sun, met with countless drs etc. only to be told there is no cure and just to keep going as best we can. I have read many of your posts and they have given us some peace just knowing we are not alone. I also am just starting a blog writing about the challenges from a wife’s perspective. I am interested in raising awareness, money, etc. my personal email is Karen515davis@gmail.com. Let’s join forces in fighting this horrible, misunderstood disease.

    • January 16, 2012 10:00 PM

      Hello Karen,

      I am so sorry for your loss, the both of you. A marriage changes drastically in the face of constant, undaunted pain. I alos know how alone it can feel – the sense that you are cut off from the “real” world in a very meaningful physical sense. Have you joined CPS Alliance at CPS_ALLIANCE@yahoogroups.com? There is also a Facebook group. Both groups are combinations of patients and caregivers (unfortunately not too many doctors yet). The caregivers are wonderful for the support and assistance they give to one another.

      You are right – we (actually ALL of us) need to team up to combat this disease.
      I’ll be sure to take a look at your blog.

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