Every story needs a beginning, although not everything starts with a Big Bang. If you are the victim of a traffic accident, it is easy to pinpoint the exact date of your problems, but is there an exact beginning for ME/CFS?
February 2002
In February 2002 I got diagnosed with Chronic Fatigue Syndrome (CFS) at the CFS Reference Center in Gent, Belgium. This is an exact point in time, but it wasn’t the start of my health problems. The fatigue problems started 9 months earlier in the Spring of 2001.
May 2001
Austria, 2001
In May 2001 I visited Austria, and I really was in need of a vacation. First I spend a couple of days near Neusiedler See, which is a part of the Hungarian Puszta. This is a very flat region and I made several 20-30 km hikes and even a 70 km bicycle ride just to see the Great Bustard (Otis tarda). The second part of my journey in Austria took me to the mountains. On my first evening there, I made a 2 hour walk and the next day I couldn’t get out of bed; I was hurting all over. The days after that I made smaller walks and I recovered. I made another big day trip walking up a mountain covering a difference in height of 800 m and the way down was a very rough track. I don’t remember ever feeling so much pain as the next day. It was then that I made up my mind; no more mountains for me and I decided to stick with vacations to coastal regions in the future. Had I known that this would be my last backpacking holiday, I would have chosen a different destination: Shetland, Faroe Islands, Scandinavia, or maybe even British Columbia. After returning from my holiday I went back to work and that was it, or so I thought. Was this where it all started? Austria has a bad reputation concerning ticks, but tests for Lyme disease came up negative. And I don’t remember getting bitten in Austria.
June 2001 – November 2001
I started to experience more and more fatigue. I had to cut down on the time I spend in the gym and going out. Gradually I started going to bed earlier and I had to spend more time during the weekends resting. My doctor originally thought it was caused by stress and I thought so too. The relationship with my employer had turned sour. I worked as a functional analyst and project manager for small software projects and somewhere in February-March 2001 I was told to take over a project from my boss, who didn’t had enough time anymore and a colleague who would be leaving the company. The takeover kept on being postponed until the moment my colleague left. The project was long overdue and wasn’t ready. I finally got to test the software and it crashed just starting up; I couldn’t even go bug hunting . Guess who got the blame? Guess who stepped up to the rescue … my boss. My protests were ignored, meetings were cancelled, sour turned to conflict, and some time later someone from management intervened telling me that they just needed a scapegoat for a while. My colleague was gone, they couldn’t let my boss, a manager, take the blame and it would only hurt my career for a year or so. I refused. Until then it had been a good employer, so I decided to request a transfer to a different department, but they didn’t let go. Convinced that my ever increasing fatigue was caused by my work, I decided to go job hunting.
December 2001 – January 2002
Yes, a new job, a substantial pay raise, only a 5 min commute by car (versus 20 min and once a week 75 min for my previous job), at least 6 months of on the job training at my own pace, very good career prospects- my new boss was hoping I could take over some of her tasks in the near future like function and requirement analysis and managing some of the smaller projects. It was such an exciting time, with even a new relationship. There was only one problem, the fatigue continued to get worse. I had taken a 2 week holiday in-between jobs and as my symptoms didn’t went away, my doctor started taking my complaints more seriously. She sent me to the hospital for some more elaborate testing, which all came back negative and in it was in November 2001 that she mentioned CFS for the first time. When the time came that I spent 1 day at work followed by 1 day on sick-leave, I got diagnosed with CFS at the newly founded CFS Reference Center in Gent and after an extended period of sick-leave I got promoted to disability.
Or do I have to go much further back in time?
Multiple vaccination in 1996
I was hoping of one day visiting some more exotic countries and decided to get vaccinated, just in case I would have the opportunity for a last-minute trip to Thailand, Gambia, … It never happened, though. Some CFS patients can trace the start of their fatigue back to a couple of months after a multiple vaccination, but 5 years is a long time.
I never really bothered with flu vaccination, but my employer during the years 1998-2001 strongly encouraged it. It was free and done in the company, but I don’t believe this was a trigger.
November 1990
One day in November 1990 I became, overnight, allergic to milk, chocolate, bananas, oranges, … I used to consume dairy products every day; at least 1 liter of milk each day, cheese, butter, ice-cream, yoghurt, buttermilk, … One day I went out and drank a little more alcohol than I was used to and the next day I felt a bit sick. Big deal, happens to tens of thousands of students worldwide each day. I breakfasted, drank some milk and went to class. After a while I felt nauseous and went to the toilets where I fainted. After I regained consciousness I excused myself to the professor and went to my dorm where I drank some more milk went to my room and some time later regained consciousness lying face-down on the floor. I very quickly figured out that milk was part of the problem, but no allergies showed up in blood tests.
By word of mouth I came into contact with a doctor who was supposedly a specialist for allergies and food intolerances. His method of diagnosing was very strange; poking me and seeing how long the impression lasted and how long it took before the color came back. He gave me the diet, no dairy products, no tropical fruits, no alcohol, no peanuts and no chocolate, and some medication. Apart from the strict diet my life went back to normal, but I had difficulty staying awake during class. It was not related to lack of sleep or going out. So I asked to the doctor if it could be caused by the medication. He became very agitated, because I dared to question his custom medication, but he gave me a new custom prescription. Only now I became so nervous, so agitated, my hands were trembling, … and this was not something you want when you have a lot of lab-work (chemistry and biochemistry). I went to the pharmacist and asked if I could have a look at both prescriptions. The difference between both prescriptions was, quoting the pharmacist, a lot of caffeine. I called the doctor on the phone and explained the situation, he got very angry because I was the first patient who dared to question his prescriptions and he closed the connection. The family doctor at the time told me that if you feel bad after consuming milk or chocolate, simply avoid it. So I dumped the medication and stuck to the strict diet and a year and half later I graduated as a Master in Industrial Sciences in Biochemistry.
Could these allergies and food sensitivities be related to a heavy dose of antibiotics I took in September 1990 to cure a 3 month old cold? According to my doctor at the time, “absolutely not.”
Insomnia 1985 – 1996
I first started to experience insomnia at the age of 15-16, lying awake for an hour to an hour and a half before falling asleep each night. So what, I put my headphones on and listened to music. By 1996 I didn’t only experience problems falling asleep, but I also woke up several times each night and I had difficulty getting back to sleep. As I was already working by then and had to commute by car, I asked and received medication for improving my sleep. For anyone who hasn’t experienced prolonged insomnia, perception becomes surrealistic, the colors become too bright, you get tunnel-vision, you lose concentration, and I didn’t want to cause any traffic accidents. With the sleeping meds life went on, even with the strict diet mentioned before. I visited Wales, Shetland, Côta Doñana in Spain (one of the largest European nature reserves), Eilat in Israel (bird migration, esp. for raptors), did some last minute trips to Spain, Turkey and Tunesia and occasionally went backpacking in the Netherlands and in the Ardennes. All this before 2001.
1982
In 1982, at the age of 13, I got bitten by a tick. It was quickly removed and I never experienced any of the symptoms. I also got tested before being diagnosed with CFS in 2002, but Lyme disease is known to give false negatives. I thought I should mention this as well.
So when did it actually start for me? At the official date in February 2002 or much earlier? Does Myalgic Encephalomeylitis/Chronic Fatigue Syndrome (ME/CFS) even have a starting point or is it something that gradually undermines your health?
| Health is the greatest possession. Contentment is the greatest treasure. Confidence is the greatest friend. Non-being is the greatest joy. |
| Lao Tzu |
