For many people, including myself, the pain that is endured during the onset of GBS can be more difficult to deal with than the realization of becoming paralyzed. Speaking with other GBSers, there seems to be different stages and levels of pain one does or does not experience. For me, the pain was excruciating from the start and finding relief proved to be a frustrating and sleepless process. After being given countless medications to no effect, I was put on a Morphine drip. Thankfully, that did the trick because I honestly don't know how much more I could of taken. I feel that a big part of why it took so long to find a solution was because I couldn't accurately describe my pain. Looking back now, I wondered if there was anything online that may of helped to classify my pain level or category of pain I had. In my search, I came across neurology.org, listed was a classification of different levels and types of pain described on a medical scale.
This is the Neurology.org mission statement: "Neurology® will provide clinical neurologists with outstanding peer-reviewed articles, editorials and reviews to enhance patient care, education, clinical research and professionalism."
Here is the link on pain: neurology.org
Hopefully this will help others the way I feel it could of helped me!
J.D.
Looks like you are off to a great start! I too have come through a tough time with GBS, Miller-Fisher variant, had lots of pain, still take neurontin, and am glad that I can function, albeit not so energetically as before. I started a blog at http://gbs-onamorepositivenote.blogspot.com/ to try to have an encouraging word out there for people with GBS. It was hard for me to find positive or uplifting experiences out there when I first came home in spring 2009. I post sporadically now as I am back working some and life is busier. But this looks like a great blog. Keep it up!
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