Is chronic fatigue syndrome even a real condition?
Or, is it a sign that your doctor has stopped investigating your case?
Chronic fatigue syndrome is real. But it’s one of those conditions that will see you struggling to get the treatment you need. In the medical world, if you have a disease, you’ll probably receive much better medical care than if you have a syndrome. There’s nothing fair or just about this situation. As far as you’re concerned, the difference between a disease and a syndrome is arbitrary.
You don’t care what it is. You just want to increase your energy!
All too often, those diagnosed with syndromes can face a more difficult journey through the medical system to reach a clear diagnosis. This is because a disease has a specific, identified cause. Whereas a syndrome describes a group or cluster of symptoms without a known cause.
Sometimes, this lack of cause can result in the conclusion of medical care. I’ve seen many patients who received a diagnosis of chronic fatigue syndrome or irritable bowel syndrome by a specialist who then sent them on their way. As though the specialist’s job was to name your symptoms and nothing else.
If you get diagnosed with chronic fatigue syndrome (or any other syndrome), that does not mean that what you’re experiencing is in your head. Syndromes are no less real than diseases. Chronic fatigue syndrome is real. I’ll prove it to you in today’s post!
What makes chronic fatigue a syndrome?
Defining a syndrome isn’t straightforward. Perhaps that’s why there’s so much confusion surrounding syndrome.
A syndrome is a collection or set of signs and symptoms that are correlated with each other but do not have a known cause. (1)
Take chronic fatigue syndrome for example. CFS consists of a range of symptoms that includes fatigue, malaise, headaches, sleep disturbances, difficulties with concentration and muscle pain. (2) The collection of these symptoms make up the syndrome known as chronic fatigue.
A syndrome is NOT specific to any one disease and in some cases could even consist of multiple diseases. That chronic fatigue of yours could be a syndrome unto itself. Or, it could be a symptom of another disease process. This is why determining if your collection of symptoms is indicative of a syndrome is so difficult. Add to this the fact that many symptoms can be so wide-ranging that some medical professionals will brush off these complaints as imagined or all in your head.
More often than not, it is through an extended process of elimination involving a wide range of medical testing that you finally get diagnosed with a syndrome. Syndromes tend to be a diagnosis given out of exclusion.
For example, a diagnosis of chronic fatigue syndrome is often given after all other lab tests that could cause fatigue come back within normal ranges. Your thyroid is healthy. Your iron levels are healthy. You have good amounts of vitamin B12. But you’re still fatigued! Your doctors are unsure why you feel tired all the time – all your lab values look normal – so you are given the diagnosis of CFS.
This can be time-consuming and frustrating. Particularly if, at the end of the process, you are told your symptoms indicate a syndrome for which there is no known cause or cure. Imagine going through years of medical testing to finally receive a diagnosis of chronic fatigue syndrome – a condition for which there is no known treatment. You leave your doctor’s office with another prescription for an antidepressant… Even though your condition is real!
Chronic fatigue syndrome is real. Yet the care you get from your doctors is anything but real. A month later, you go back to your doctor and receive a recommendation for graded exercise – which only makes you feel worse – and a renewal of your antidepressant prescription.
Syndromes don’t receive the kind of care that diseases do. Which comes in part by a lack of understanding.
So, chronic fatigue syndrome isn’t a disease?
Right. CFS is a syndrome. Not a disease. The official definition of a disease is as follows:
A disease is a particular abnormal condition, a disorder of a structure or function, that affects part or all of an organism. (3)
To be clear, the term disease broadly refers to any condition that impairs the normal function of your body. The difference between a syndrome and a disease is that the cause of the illness must be known in order for it to be classified as a disease.
A disease has a known cause. Syndromes have an unknown cause. This is the crux of why your medical care for CFS is so lousy. Your doctor doesn’t know what’s causing your fatigue. When you don’t know the cause, it’s incredibly hard to treat an illness!
Chronic fatigue syndrome is real. Your doctors can certainly agree that you’re tired. But what’s making you tired is the question they struggle to answer. And that’s why your treatment is ineffective.
Chronic fatigue syndrome is real, isn’t it?
I get it. This is frustrating. And confusing. But by educating yourself more on chronic fatigue, you’ll better position yourself to advocate for the care you need. Talking to your doctor can be a frustrating process. I hope to make it easier for you by the end of this post.
Here are a couple more examples to help make you an expert in differentiating diseases from syndromes.
Measles is classified as a disease because its direct cause has been determined – it is caused by the measles virus. Notice how the name of the disease (measles) consists of the name of the cause (measles virus).
Had the measles virus not been discovered, the symptoms that we know indicate measles would instead be classified as a syndrome. These symptoms include:
- runny nose,
- inflamed eyes,
- a flat red rash that spreads all over the body.
As measles has a known cause, it can be diagnosed more easily. Your doctor can recognize the characteristic rash, look for a small, bluish-white spot on a red background on the inside lining of your cheek, and run a blood test that would definitively indicate that the measles virus is present.
Because measles has a known cause, developing a treatment becomes easier. Hence, the existence of the measles vaccine. This vaccine contains a weakened version of the virus which triggers the immune system to produce antibodies against it. If you’re is exposed to the measles virus at a later date, your body’s immune system would immediately recognize and destroy it without the virus taking hold.
Had the cause not been discovered, the medical profession would only be able to treat the symptoms. Imagine getting prescribed antihistamines for your rash and inflamed eyes, and Tylenol to help lower your fever.
This would be a terrible way to treat the measles. Yet this is exactly what’s done to treat syndromes. Hand out a prescription to improve a particular symptom. Add medications until all the symptoms have been addressed.
As I’m sure you already know, this never addresses the root cause. And the side effects associated with stacking medications is a mile long!
Irritable Bowel Syndrome:
Irritable Bowel Syndrome (IBS) is a chronic condition that commonly causes:
- abdominal pain,
It affects approximately 10-15% of people worldwide. Canada has one of the highest rates of irritable bowel syndrome in the world with an estimated number of five million Canadians currently suffering. That’s one in seven Canadians affected with IBS! (4)
IBS, like chronic fatigue syndrome, has no known cause. Therefore it is not categorized as a disease. Without a specific cause to look for, diagnosis can be difficult. In the past, a diagnosis could only be made by testing for and excluding other disorders. The newer approach relies less on extensive testing and more on defined patterns of signs and symptoms.
However, some testing is still necessary and can include:
- Blood tests,
- Stool tests,
- Sigmoidoscopy or colonoscopy;
- Psychological tests. (5)
The above tests are done to determine if there is a disease process sustaining IBS. For example, Clostridium Dificile infections could cause a similar array of symptoms as IBS. However, this would be diagnosed as a Clostridium Dificile infection, not IBS, because there is a known cause of the symptoms. IBS is the diagnosis only when all other diseases known to cause gut issues have been ruled out.
As there has not been a specific cause identified, there is no known cure for IBS. Instead, treatment is aimed at managing the symptoms. Which is why you may get outrageous recommendations from your doctor like taking an antidepressant – they’re trying anything to treat your symptoms.
Fibromyalgia & chronic fatigue syndrome:
Fibromyalgia and CFS are similar to irritable bowel syndrome in that the cause is unknown. Fibromyalgia and chronic fatigue have a common collection of symptoms that include:
- Widespread pain,
- sleep disruption,
- brain fog.
This collection of symptoms make up the definition of fibromyalgia and or chronic fatigue syndrome. Like IBS, both fibromyalgia and CFS are classified as syndromes. Not diseases.
Fibromyalgia was originally diagnosed using an unreliable test known as the tender point diagnosis. If you had chronic pain present in at least 11 of 18 areas on the body then you had fibromyalgia. Fortunately, the diagnostic method has been refined. Physicians now use the following criteria:
- This is, of course, is the primary concern. The new diagnostic criteria state that pain must be present for at least three months without reprieve.(6)
- There must also be no physical abnormality of the tissue where the pain is experienced.(7) This means that when the area of pain is palpated, there should not be a lump of tissue or ropey muscle fibers.
- The pain can vary in location and intensity. (8)
- Associated symptoms
This last point is key. All other disorders must be ruled out for a definitive diagnosis of fibromyalgia or chronic fatigue syndrome.
Once all other illnesses have been ruled out, a diagnosis of fibromyalgia and/or chronic fatigue is given. Now, treatment can begin. But since no one knows the cause, fibromyalgia and CFS can only be treated with a range of medications to manage the symptoms.
These are only two examples of syndromes. There are many other syndromes, all of which have symptoms that are just as capable of negatively affecting you like a disease. They are only classified as syndromes because there has not been an identifiable cause, not because they are any less serious.
Syndromes are not psychological disorders. Chronic fatigue is not in your head. Chronic fatigue syndrome is real. The cause of your fatigue may not yet have been identified. But there is a reason why you suffer from fatigue.
If you want help uncovering the root cause of your fatigue, I recommend starting with the food you eat! Check out my new course designed to move you from fatigued to flourishing in only a few short months!
Now, I want to hear from you!
How has a diagnosis like fibromyalgia or chronic fatigue prevented you from receiving proper medical care?
Share your answers in the comments section below!
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