For anyone who has been diagnosed with post-viral fatigue syndrome (PVFS), chronic fatigue syndrome (CFS), or myalgic encephalomyelitis (ME), and refuses to accept the diagnosis, this post is for you.
I first discovered that something wasn’t right with my body in April 2010 when I fell very ill with a virus. My entire body ached for two weeks – my muscles, my bones, everything from the top of my head to the tips of my toes. I couldn’t stand to be touched. It was like the all-over ache people get with the flu, but a hundred times worse. The only fever was on the first day and I didn’t have any other symptoms, except for extreme fatigue.
With Mr T working full time; Tomboy and Boywonder attending three and four-year-old kindergarten; and Miss Flora an eleven-month-old, breastfed baby, I didn’t get a lot of rest. Miss Flora had only just been diagnosed with milk protein and wheat intolerances, and was a very clingy baby. I was also trying to keep up with my online studies. After two weeks, the aches started to subside, so I tried to do a bit more around the house, but I was always weighed down with a persistent fatigue. The more I tried to do, the more the aches returned and the heavier the fatigue got. We soon realised that I wasn’t going to be back to normal anytime soon.
My doctor ran tests for many inflammatory illnesses, such as rheumatoid arthritis, lupus, etc, but they all came back negative. My urine tests and kidney ultrasound confirmed that I had nephritis (excess protein in the urine). My illness was now labelled as a ‘nasty virus’. Every time I started to feel better and tried to do a bit more, I fell ill again. The fatigue would return ten-fold and the aches would wind their way through my arms and legs. I’d also feel very nauseated and suffered constant headaches. Every ‘good’ day I had was followed by at least two ‘bad’ days.
After several weeks of going backwards more often than moving forwards, my doctor told me that I had post-viral fatigue syndrome (PVFS) and that it could take six months for me to get over it. Six months seemed like a lifetime, especially with young children to look after.
I was devastated with what she had told me. I had an illness that had no cure? I was expected to wait for it to go away? I couldn't accept this. I needed to get better now. My family needed me now. So I did the only thing I could think of. Something that most doctors hate you doing – I turned to Dr Google…
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