MY DIAGNOSIS

One day in December 1994, after having the flu twice that month, I woke up feeling terrible, I couldn't do anything, even simple things like taking a shower or making the bed made me feel like I'd just run a marathon. Everything I did made my muscles ache. After feeling like this for about a week, I knew something was wrong so even though I hated going to see doctors, I went. The doc tested me for everything he could think of but all the tests came back clear ( excepting that I had ITP ). I continued to visit the doctor for a year, he did regular blood tests to make sure nothing showed up. Eventually, one day he said to me, "I think you'll find that when you find another job, you'll feel better" This outraged me, firstly because I knew that what I was suffering was not psychological, and secondly because this doctor knew that I had had to quit my job when I started suffering the symptoms I had!! How could he tell me that the way I was feeling was caused by being unemployed?!? At this point, I started going to another doctor, she was much more helpful, did more of the same tests, took into account that I had been feeling this way for more than six months, ruled out depression and concluded that I did in fact have Chronic Fatigue Syndrome.

In 1999 I underwent a sleep study and was diagnosed with Sleep Apnea. Even though I was only recently diagnose I suspect I have actually had Sleep Apnea since I was about 17. I remember around that time I started coming home from school feeling sleepy and taking a short nap. So while Sleep Apnea does cause exessive daytime sleepiness and is contributing to my other symptoms it is likely neither a cause nor a symptom of CFS.

THE SYMPTOMS

My primary symptom is excessive fatigue, closely followed by cognative difficulties. When I say "fatigue" I don't mean that I feel like I need more sleep! (That's the first thing people usually say, you should just sleep more.) The dictionary says fatigue means "Weariness from bodily labor or mental exertion; lassitude or exhaustion of strength" basically, what you feel like after doing a great deal or work or exercise. I feel exhausted most of the time, even after doing very little. Add to that muscle aches and pains, headaches, and severe concentration and memory problems (the name for this is "Brain Fog") and you have the basic symptoms of CFS. Brain Fog is a terrible thing to live with. You can't concentrate, you can't remember things, you can't even speak properly half of the time. Living with CFS is like living with the flu for 24hrs a day 7 days a week. Some people have other symptoms too, including sore throat and fever. At times people suffering the effects of Chronic Fatigue Syndrome are unable to do most daily activities, including things as simple as taking a shower or fixing a meal. At times like this, bed rest is the only option.

THE CAUSE

The cause of CFS is still unknown at this stage. Most research indicates that it is triggered by an abnormal response to a virus, often Glandular Fever, Ross River Virus, or Hepatitis. Some doctors believe that for some reason the body's immune system doesn't "turn off" after the the initial infection. For some people, symptoms start gradually, for others the onset is very sudden.

THE CURE

The drug Prednisone ( a steroid ) is often used in the treatment of ITP. Often the dose can be reduced after time without the platelet count reducing. There can be a number of side effects associated with Prednisone, mood swings, swelling, increased appetite, flushing of the face and high blood pressure. These side effects usually disappear when the medication is stopped. Some people with ITP benefit from a Splenectomy - a surgical procedure to remove the spleen. Unfortunately, a Splenectomy does not always return the patient's platelet count to normal and the immune system can be compromised.

Platelets play a crucial part in the blood clotting process by forming a platelet plug. This is a two step process. First, single platelets bind to the site of the wound (adhesion). Next, the platelets bind to each other (activation). Activation can be stimulated by components released when the blood vessel is damaged and by thrombin, released during the blood clotting process. When platelets become activated they change. They release agents which recruit and activate the surrounding platelets. The result of these two processes is the formation of fibrin which stabilizes the platelet plug, stops bleeding and allows injuries to heal. (This Platelet text taken from The ITP People Place)