So there I was at the middle of 2006 with a diagnosis of CFS, four years of not working due to ill health and nothing other than relaxation instructions and advice, which was basically learn to live with it and it might improve over time.
I have this horrible feeling that at this point there might be many people with CFS that would just get forgotten about and left to try and cope as well as they can with their symptoms.
There were no suggestions from my doctor for anything else to try.
For me however, I was and am determined to find the cause of my CFS. My thinking is simple, if I have a problem then something must be causing it, don’t just live with it, find and fix the cause if it is possible.
I looked back over all the letters from the consultants and the research I had done to see what I could find. In the letter from the first Neurologist I had seen at the start of 2006 it had mentioned that I might be suffering from a mild form of Post Hepatic Neuralgia (PHN), as a result of my Shingles outbreak. In the letter the consultant suggested trying Amitriptyline or Gabapentin. I went back again to my doctor and discussed the comments made by the consultant and as I had already tried Amitriptyline we decided that I should try Gabapentin.
Gabapentin is an anticonvulsant which has been shown to relieve the pain of PHN.
I started taking Gabapentin and it took a while but I started to think I was seeing some improvement. My headache had not stopped but I thought my general mood had improved. I was also taking other normal headache tablets to try and totally eliminate my headaches without success. I continued taking Gabapentin for about two months, slightly varying the dose within the limits set by my doctor to try and find the level giving the most benefit. I used the daily charts I described earlier to try and help me gauge if changes in medication had improved things or not.
As I felt I was starting to see some improvement in my CFS condition due to my new medication, I decided to research Post Hepatic Neuralgia further.