Saturday, 28 July 2007

It all started...

It all started one weekend with an intense flu-like condition. It didn’t extend more than two or three day, but I experienced severe chill, muscle ache and general malaise. After that I felt OK again. Three or four week later, I suddenly developed chest pains and became more and more weak and just wanted to sleep. Since this was during the summer holiday I didn’t do anything special, just trying to take it easy, and slept all the time. Later I started also t develop joint pain, in my ankles and knees and hands. A month and a half later when I was supposed to go back to work, it didn’t work at all. I ended up at the emergency room, at the university hospital where I lived. This was some 27 years ago. Since I had significant chest pains still, and had been in contact with cardiologists at the hospital before (I had a minor mitral-valve prolapse discovered a few years earlier) I was put in the cardiology ward. Over the next year(s) I spent more time there than home, running tests, just resting with extra oxygen, or getting morphine to ease the pain; getting back because of severe chest pain and fatigue outbreaks, checking for heart infarct, which they of course never found any evidence for. Half of the doctors said I was imagining, being a hypochondriac, half didn’t know what to say, and then there was this older, experience female cardiologist who told me that “I have seen this many times before, but we don’t know what it is”! Well, so much for today. I will tell the rest of the story later... I’m sure this is not a unique story about how CFS can present itself, on the contrary quite common.

Living with Chronic Fatigue Syndrome

I have had Chronic Fatigue Syndrome (or CFS) since the mid-1980. Here I will try to tell about my daily life and how I am coping, give hints about what is known about the causes of CFS, and stimulate discussions between fellow sufferers. Even if the condition have been known for quite some time, only now at a few places, it is taken seriously and is called a real disease. But we all know that - we with CSF.