I was diagnosed with CFS during July of 2006. In chronological order, this blog post will examine the events that may have caused my CFS and also the events that made my CFS worse. I am writing this for several reasons. Firstly, I believe it is important for me to document these events as in the future I may forget some of them. Secondly, as I write this post, I will examine the significance of some of these events. Thirdly, others reading this post may have experienced some of these lead up events and may find them significant.
Prior medical history- From birth to age 14 (1987-2001)
I had always been relatively healthy, prior to developing CFS. As a child I had asthma however by the time I reached 10, the asthma was barely noticeable. I had always had sinus problems as a child. Many people in my family have also had sinus problems. By the time I was 7, I had an operation to clean my sinuses out.
From 15 to 17 (2002-2004)
I decided to give up junk food at the age of 15. This was purely out of seeing no point in living a life of cravings, lack of self-control and eating causing detrimental health. At 15 I also took up middle/long distance running. In the past I had played soccer, Australian Rules Football, cricket, tennis, baseball and many other sports. I left these sports and became more and more focused on running. I made my first state team in 2006 and in total represented my state in the Australian championships around 6 times over the next 2 years. I ran 6 days a week and covered approximately 60kms a week. I pushed my body physically through running. At 16 I developed the shingles, with a rash on the side of my body.
At 16, I was completing my second last year of high school. I was doing two final year subjects (both maths) and I did more work this year than in my final year. I was never overwhelmed by the stresses of school work and only spent about 20 minutes a night doing homework in my second to last year of high school. All throughout high school I lived quite a busy life, completing many extra-curricular activities. This was the way that I loved life, being busy and rarely being bored.
From 17-18 (2005)
This was my final year of high school. I was completing a reduced work load this year, having completed the two final year maths subjects the year before. I was studying English, Geography, Physics and Tourism. Final year students normally study 5 subjects. I must emphasize that although this was my final year of high school, I was not stressed. I was studying less subjects than everyone else and completing at most 10 minutes of homework a night. Throughout 2004/ 2005, one of my friends who was an athlete developed CFS.
Throughout 2005, running was my main focus. I was running as fast as I ever had been at the start of 2005. This was until I was competing in the steeplechase in February 2005 and my shin hit the steeple. I needed 6 stitches and retained a sizeable scar on my shin. I also had a tetanus injection because of this incident. I experienced some running injuries throughout 2005. I had some problems with the back of my knees and was even offered surgery to fix the problem. I also had several cortisone injections.
During June of 2005, I began to cough up some mucus while I was in the shower. I thought nothing of this at the time. This continued everyday and I began to ponder whether something was not right. I had no other symptoms so I wasn’t overly concerned. During September 2005, while I was staying at a friend’s holiday house at the beach, I woke up one morning and wasn’t feeling right. Throughout my whole life, I had always woken up at around 6am, however today I had woken up at 8am (despite having an early night.) I had woken up feeling tired and a bit exhausted. This continued to happen however I just attributed it to running training and subconscious exam pressure. (My final year exams were a few weeks away.) I remember being at school the next week after holidays were over and feeling exhausted during the day. I suggested to my parents that I should have a blood test. They dismissed this and attributed my exhaustion to exam stress.
I began to sleep during the days for a few hours every day and had a sore throat and a lack of energy. I finally convinced my parents to take me to get a blood test. The blood test showed that my iron levels were slightly low (although most runners have levels that are equitable to mine.) I took an iron supplement and my iron levels increased however my exhaustion didn’t disappear. The blood test also showed that I caught EBV at some time in the past but at least 3 months ago. I had a virus for about a week and missed two of my three exams. I completed the third exam and was disappointed to miss the other two exams as I felt like I was knowledgeable about the exam content. October and November passed and I attended the school leaver’s celebrations for 4 days. This involved getting about 2 hours of sleep a night. I returned from the celebrations and continued to be exhausted and sleep throughout the day.
During December 2005, I developed tonsillitis. My doctor said it was the worst case of tonsillitis she had ever seen. I took antibiotics and recovered. A few days after finished the dose of antibiotics, I came down with the tonsillitis again. This happened again and again so in total I had tonsillitis four distinct times over December 2005 and January 2006. I saw an Ear, Nose and Throat Specialist and he said I needed my tonsils out. I stayed on antibiotics for February and March and got my tonsils taken out during April 2006.
I had just started studying astrophysics at University. The course involved 30 hours a week of lectures and tutorials plus homework on top of that. I was enjoying the content of astrophysics and had hoped that my tonsillectomy had stopped all of my health problems. Unfortunately this was not the case as I developed severe headaches whenever I was inside. My headaches would dissipate when I was outside in the fresh air. A degree of cognitive impairment accompanied the headaches. My exhaustion continued and the coughing up mucus that started in June 2005 had continued every day since. I would now cough up mucus not only in the shower but outside as well. I also coughed up an increasing amount of mucus. Since September 2005, I had still wanted to run however I could only train on a modified program intermittently and this mainly consisted of jogging.
My doctor was puzzled at my symptoms and I had an array of tests performed on me. My doctor did notice a slight heart murmur and sent me off to a cardiologist. The cardiologist determined that the heart murmur was present only because I was so fit and healthy. My doctor then sent me off to an endocrinologist who specializes in CFS. He sent me off for a SPECT scan which showed that I had impaired blood flow to the brain. The impairment of blood flow to the brain was much more severe than my symptoms were at the time. In other words based on my symptoms at the time, he thought I would only have a mild impairment of blood flow not a significant impairment of blood flow. I was diagnosed with Chronic Fatigue Syndrome by the endocrinologist, this was in July 2006. At the time I was ecstatic to finally have a label to put on all my symptoms.
In July of 2006, I deferred my astrophysics course after a semester of studying. It was very difficult to maintain a 30 hour week of University plus homework with my symptoms. My parents urged me to find a job, rather than doing nothing. By September I started working at a supermarket checkout. I did this for about 20 hours a week. I also volunteered at the Oxfam Shop, one day a week.
My CFS symptoms fluctuated from day to day however a lack of energy, severe headaches, cognitive impairment and post exertional malaise were the worst of my symptoms at this stage. I continued to work at the supermarket and Oxfam for approximately 9 months. I had completely stopped jogging at this stage because I wasn’t well enough to. No doctor ever suggested that I stopped running and because of my love of running, I had always managed to continue it. It was just too much though and I was focused on getting well again.
During the start of 2007, I experienced reoccurring sinusitis. This was similar to the reoccurring tonsillitis I had experienced earlier in that as soon as I stopped the antibiotics, it would return. The sinusitis reoccurred five distinct times over the period of two months.
My CFS symptoms hadn’t alleviated despite trying some basic treatments and various tablets (I won’t elaborate on the treatments I’ve tried here as I’ve documented these in other blog posts.) I had decided to go back to university but change courses from astrophysics to philosophy. This change was mainly due to the CFS not making it possible for me to study an intense, in-depth course like astrophysics for 30 hours a week but hopefully I could cope with a simpler course like philosophy for 10 hours a week. At this stage, April 2007, I was studying at university and working at a supermarket and Oxfam. I managed to do all of this for about two months and it was a struggle. My CFS symptoms got worse, so I had to quit both the supermarket and Oxfam. I continued at University to finish the semester.
By second semester, my CFS symptoms had progressively got worse. I managed to get to University for the first two weeks of second semester before the CFS made me too sick to leave the house. I managed to finish the semester, by studying at home. By not attending University, I lost a lot of marks however did pass the subjects. It became apparent that I couldn’t continue to keep being a University student while being too ill to attend University. Some courses don’t require students to attend classes and they can be completed online. Unfortunately philosophy wasn’t one of these courses. Also, my symptoms were too severe to continue University with a different course online, so I decided to defer from my philosophy course.
By this stage I had tried hundreds of different treatments and none had any effect on me (I’ve detailed these treatments in other blog posts.) A doctor prescribed me T3 for high TSH levels and my condition suddenly got worse. I had been able to leave the house before for short periods but now I was housebound. I also became severely sensitive to sounds and smells. I stopped the T3 after a month however my condition did not improve. Another CFS doctor put me on a graded exercise therapy program. I wore a pedometer and increased the number of steps I did per week by just 500. I did this for 2 months until I had to stop as this had made my CFS even worse. During July 2008, I returned to the endocrinologist I had seen two years earlier and he diagnosed me with severe CFS.
My CFS has progressively got worse. I am now bedbound and have been since 2008. For a description of how severe my CFS is now, click here: https://livingwithchronicfatiguesyndrome.wordpress.com/2009/11/16/how-severe-cfs-is/
It is worth mentioning that it is possible that none of these events may have anything to do with me getting CFS. On my mother’s side of the family, 6 out of 26 people (including me) have been diagnosed with CFS. My Grandmother on my mother’s side had symptoms similar to atypical MS. She also had many blood transfusions prior to these symptoms. It is possible that some genetic factor or some infectious factor (maybe XMRV, or another infectious agent) has caused such a high proportion of CFS patients on my mother’s side.
I do not know what caused my specific case of CFS, however this post shows that there are many possible ‘triggers’ that may have set off something that I already had. I believe the most likely scenario is that one or more of the above ‘triggers’ set off the genetic of infectious agent in my body (something from my family) that caused CFS.