In my country it is more commonly known as Chronic Fatigue Syndrome (CFS) but is also known (to a lesser degree) as Myalgic Encephalomyelitis (ME). In some countries, it is known only by Myalgic Encephalomyelitis (ME). This very point illustrates one of (and there are many) the frustrating problems with this disease. Any other disease is known by the same name in every country but for some reason CFS / ME has many different names, which further complicates an already complicated illness.
The name, Chronic Fatigue Syndrome, is the worst name this illness could have. While extreme and debilitating fatigue is part of it, it is only one small symptom of it.
In a nutshell, the body of a person who has ME/CFS does not produce energy the same way a healthy person does. A healthy person's body replenishes its energy after a night's sleep. The amount of exhaustion experienced, directly relates to the amount and type of activity they've done.
Not so for a person wit ME/CFS. For starters, they become exhausted (and I do mean exhausted!) after only minimal activities that most people do NOT give a second thought to. Minimal activities they never gave a second thought to pre ME/CFS and when I say minimal, I do mean minimal. Things like having a shower or preparing a meal or even less. No amount of sleep replenishes the energy and quite often after a full night's sleep, one feels even worse. With ME/CFS, it's exactly like pumping air, continually, into a flat tire. Just as the flat tire would never inflate, the energy of a person with ME/CFS does not replenish.
The symptoms, (which are on-going, continuous, day after day, 24 / 7, for months and years without end), of ME/CFS are (but not limited to):
Then there are the comments....comments such as, "I get tired as well" that must be endured. The fatigue of ME/CFS is nothing the same as normal fatigue, not even close. Comparing the exhaustion of ME/CFS to regular tiredness is like comparing a mud puddle to an ocean. Frustrating does not begin to describe what it feels like to live with ME/CFS.
Trying to create Balance....despite the chaos.
The name, Chronic Fatigue Syndrome, is the worst name this illness could have. While extreme and debilitating fatigue is part of it, it is only one small symptom of it.
In a nutshell, the body of a person who has ME/CFS does not produce energy the same way a healthy person does. A healthy person's body replenishes its energy after a night's sleep. The amount of exhaustion experienced, directly relates to the amount and type of activity they've done.
Not so for a person wit ME/CFS. For starters, they become exhausted (and I do mean exhausted!) after only minimal activities that most people do NOT give a second thought to. Minimal activities they never gave a second thought to pre ME/CFS and when I say minimal, I do mean minimal. Things like having a shower or preparing a meal or even less. No amount of sleep replenishes the energy and quite often after a full night's sleep, one feels even worse. With ME/CFS, it's exactly like pumping air, continually, into a flat tire. Just as the flat tire would never inflate, the energy of a person with ME/CFS does not replenish.
The symptoms, (which are on-going, continuous, day after day, 24 / 7, for months and years without end), of ME/CFS are (but not limited to):
- Extreme and debilitating exhaustion that is not proportionate to the amount of work, exercise or activity and that was previously tolerated without incident before onset of the illness.
- Energy is not replenished by sleep and many times after a full night's sleep, one feels worse.
- Flu-like symptoms (only it's like the worst flu you've ever experienced, times 10)
- Swollen, tender lymph nodes
- Sore throat
- Low grade fever
- Sore, aching muscles
- Limbs that feel like lead or cement
- Post Exertional Malaise -- This is the onset of extreme, debilitating exhaustion and flu-like symptoms that are not proportionate to the activity. Onset is usually 24 - 36 hours after activity (physical or mental). A brief shopping trip to the grocery store on Monday could cause total collapse on Tuesday or Wednesday that may last days, weeks or months. There is no rhyme or reason to it, no way to measure it, to know if or when it will happen, how bad it will be or how long it will last.
- Exercise makes it worse and can cause further damage to the body. Just as driving a car on a flat tire will damage the car, exercising with ME/CFS will cause further damage to the body.
- Brain Fog -- Cognitive difficulties. Thinking and concentrating are severely impaired. For example, things as basic as phone numbers cannot be remembered.
- It begins at the cellular level and affects all bodily systems. Because each cell does not have the energy it needs to function, it cannot carry out its intended function within the system it belongs to, which in turn causes none of the body's systems to function properly/all to be affected.
- Hyper-sensitivity -- Highly or over-sensitive to temperatures, noise, light, foods, medications -- just about everything.
- There is no test to determine ME/CFS and is therefore diagnosed by testing for and eliminating everything else. This requires many visits to various doctors and specialists and takes a lot of time and energy. One criteria for diagnosing ME/CFS is one must have the debilitating exhaustion and fatigue for a period of at least six months that is not explained by anything else.
- Waiting for a diagnosis is frustrating as it can take several years.
- There is no cure for ME/CFS. Acceptance, learning to live with it, remaking one's life and managing symptoms offer the best outcome.
Then there are the comments....comments such as, "I get tired as well" that must be endured. The fatigue of ME/CFS is nothing the same as normal fatigue, not even close. Comparing the exhaustion of ME/CFS to regular tiredness is like comparing a mud puddle to an ocean. Frustrating does not begin to describe what it feels like to live with ME/CFS.
Trying to create Balance....despite the chaos.
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