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More than just “Fatigue”

 

By Craig Maupin at http://cfidsreport.com

You come home after a long day at the office. The pace has been hectic, stressful, and unrelenting. You need a break. You need some sleep. You need to refuel and recharge.    You would sum up the way you feel as “fatigued”.

The most common physical complaint any doctor may hear is, “I am fatigued.” “Fatigue” is a universal human experience.   The sensation of “fatigue” is our body’s way of telling us to slow down and rest.   Almost all illnesses create fatigue.   Health, youth, and vigor are also no protection from the ubiquitous experience of fatigue.   Everyone, everywhere, knows the symptom well.

While the symptom of fatigue is as common as human experience itself, there is no common experience that compares to the “fatigue” of chronic fatigue syndrome (CFS). This illness delivers a level of flu-like exhaustion that is overwhelming. CFS is capable of leaving sufferers bedridden and incapacitated. It is extremely uncomfortable, and recovery from simple tasks can often require weeks. The simple strategies used to combat normal fatigue are futile with CFS. CFS has what fatigue does not -- knockout power.

The fatigue of chronic fatigue syndrome (CFS) is also distinct and definable. First, the fatigue of CFS is strongly post-exertional. Many sufferers of the illness describe having to “pay” a “price of admission” for activities they once took for granted. Secondly, those with CFS have an extended and drawn out recovery time. Together, these distinct symptoms produce something different than usual fatigue -- something akin to “hitting a wall”.

Like many people with chronic fatigue syndrome (CFS), my introduction to CFS was precipitated by what appeared to be a typical virus.   Being young at that time, there was nothing I felt I couldn’t battle through, CFS included.   But I would find in the coming years that this illness had other ideas.   I hit a wall.    Attempts to push beyond that wall simply caused the wall to move closer to me.

Don’t Pay Me Now.  Pay Me Later

It is the aftereffects of exertion that make CFS distinct. The price for engaging in activity with CFS often comes after the fact – leaving one with flu-like symptoms after activity. This can make CFS hard to manage and control, especially for those who feel life’s obstacles are simply created to be overcome.

Award-winning author Laura Hillenbrand, who penned the best seller Seabiscuit, has been courageously outspoken about the disabling nature of CFS.   Her efforts to write about the beloved racehorse, as well as do the promotional work on the book, came with a personal and physical price:

 “…whenever I overextended myself my health disintegrated. One mistake could land me in bed for weeks, so the potential cost of even the most trivial activities, from showering to walking to the mailbox, had to be painstakingly considered. Sometimes I relapsed for no reason at all. The day after I turned in my manuscript, my health collapsed. I absolutely destroyed myself in finishing Seabiscuit, and my ability to read and write is severely limited.”

Sufferers of chronic fatigue syndrome (CFS) must often weight the benefits and costs of increasing their activity.   Despite her relapse, Hillenbrand believes the price was justified given the overall outcome:   “Whether it ruins me for good, writing this book was absolutely worth it.”

Prolonged Recovery Time

Chronic fatigue syndrome (CFS) also affects recovery time. It can take days, even weeks, to recover from the simplest activity. Before CFS, I used to regularly enjoy exercise. Exercise, which produces neurotransmitters called endorphins, always left me feeling strengthened and refreshed. I looked forward to my daily run. Given my pleasant experience with the benefits of exercise, as well as my superb conditioning, I was not prepared for the experience of having CFS.

Suddenly, my recovery time was beyond anything I had ever experienced. My muscles remained sore for several weeks after exercise, instead of a few days. Within 48 hours of exertion, my body felt like it was on fire, and the flu-like symptoms returned. This wasn’t the pleasurable sensation of endorphins after exercise; it was more akin to feeling poisoned.

Johnny Bohn, who has suffered from CFS for almost 20 years, describes going from the peak physical condition of a high school athlete to a crushing inability to recover from activity.

“Before I got CFS I was a cross country runner for my high school team. I was able to easily run 7-10 miles a day every day. I could play basketball for hours without getting tired. I was in incredible physical condition before CFS, and then suddenly, I was bed-ridden in a matter of weeks.”

Nancy Henson, a PWC (person with CFS) from Charlotte, NC, worked for IBM at a fast pace job. She remembers exercise as an important part of her life before CFS.

 “I had been a typical working mom who did it all. And part of my routine was stopping after work to "work out" generally three evenings a week. After she developed CFS, she wanted to continue exercise, but found she could not do so. “Because it had been a part of my life, I tried to resume regular exercise. [After working out] I was a shell of my former self.”

Hitting the Wall

Fatigue is often our body’s way of telling us to stop, to take a breath, and to recuperate. Even so, it is common and perfectly natural for healthy people to fight through fatigue to accomplish an immediate task. For those who are healthy, there is a reserve of energy that the body can tap into. For almost any sufferer of a chronic illness, there is a desire to defy the limitations of that illness and to bravely push forward.

Sufferers of chronic fatigue syndrome (CFS) often describe something different. For the first time, they feel what is like to have no physical reserves. Because of this, many people with CFS must pace themselves and make sure they live within their physical limits.

Johnny Bohn describes this struggle vividly, “You can fight through it, but you pay for that in the long run. There are many times when you honestly can't push through it. If the tank is empty, the tank is empty. On those times, there is nothing to borrow from.”

Laura Hillenbrand describes a similar experience, “You want so much to defy this illness and live on your own terms. I hoped I could get away with it, but I couldn’t.” Like many who suffer from the illness, she believes that the name chosen by government agencies is misleading. Hillenbrand says, “When you say, I have’ chronic fatigue syndrome’, people say, ‘Oh yeah, I have that too’. She wonders how “chronic fatigue” can "describe a disease where you cannot sit, eat, walk?"

The Flu-Like Feeling

Chronic fatigue syndrome (CFS) is often described as flu-like.  In fact, flu-like illness often precedes the onset of CFS. Many who suffer from CFS can recall the very day of the viral infection that first precipitated their health problems of CFS. However, unlike the ordinary viruses they previously suffered from, the flu-like feeling continued, as if the body’s immune system continued percolating.

Like many with chronic fatigue syndrome (CFS), Johnny Bohn says the feeling is difficult to describe to those who haven’t experienced it:

 “I always explain to friends that you feel like you are experiencing the flu. Your body is just tired all over. You aren't sleepy tired, you're just beat all over. That's the closest that I can come to describing being fatigued with CFS. I only felt like I do now when I was used to be sick for a few days, running a pretty good fever. I never imagined this as a way of life.”

Laura Hillenbrand describes flu-like symptoms of CFS, “My mouth and throat were pocked with dozens of bleeding sores and my temperature was spiking to a hundred and one every 12 hours, attended by a ferocious sweat.” Nancy Henson, a PWC from Charlotte North Carolina, remembers the early years of her illness were accompanied by flu-like symptoms, “For 8 years, I battled repeated bouts of bronchitis, sore throats, and low-grade fevers.”

Taking Everday Tasks for Granted

For many with CFS, the illness means they can barely perform common everyday tasks. Beverly, who is from Alberta, Canada, used to be very active, helping her husband run a camp for children. She enjoyed the hours working with the children. But when she developed CFS, she had to save her energy for life’s bare necessities, crowding out her hobbies and work in the camp. She spreads her housework over the course of a week. “What I used to do in a day takes me all week to accomplish. I had to give up gardening, which is something I loved to do.”

Definable and Distinct

The fatigue of chronic fatigue syndrome (CFS) is not simply “chronic fatigue”. It is so much more. It is disabling. Often, the very things that restore and enhance energy, such as rest or exercise, do not seem to have the same effect in those with CFS. Sufferers miss the ability to do the things they love; many lose out on life’s opportunities as well.

There is also a level of frustration that goes with the fatigue of CFS. With this illness, to push against the wall only seems to move the wall higher. A tough, push-through-anything attitude can make the illness worse. CFS is a catch-22. Rest may help control the illness, but it doesn’t restore energy. Exercise can lead to relapses, and the very limited activities that can make living with chronic illness bearable are often unable to be performed.

CFS is not simple “chronic fatigue”.  Chronic fatigue syndrome (CFS) is unique; it is so much more.

 

To Read Part 3 of "A Disease Like No Other", press the "next" link above.