Chronic Fatigue Syndrome–How It Feels

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So we’ve learned about the symptoms of chronic fatigue syndrome. But how do these symptoms feel to those affected by them? How are they experienced? This post will attempt to convey the nature of some the symptoms of CFS in more descriptive language, hopefully giving non-sufferers a better sense of what CFS victims endure.

Fatigue–the dictionary definition of fatigue is “weariness from bodily or mental exertion (noun)” and “to exhaust the strength of (verb)”; the definition of exhaustion is “extreme weakness or fatigue; the total consumption of something (in this case, your physical, mental, and emotional energies) (noun)”. Can you imagine having all of your energy just gone, no reserves? Most healthy people only come close to this after an unusually stressful day or a day full of more physical activity or exertion than they’re used to. And yet, CFS is worse. The fatigue is extreme, severe, bone-deep, and intense. It is often without cause and is not improved with rest or sleep. It is like a heavy and relentless weight holding you down (physical) or a thick fog permeating your body and senses, muffling everything (mental; emotional). Such fatigue makes even the most basic daily activities, such as personal hygiene or eating, a challenge.

Post-Exertional Malaise (PEM)–the dictionary definition of malaise is ” a condition of general bodily weakness; a vague or unfocused feeling of mental uneasiness, lethargy, or discomfort”, and lethargy is “the quality or state of being listless and unenergetic, dull, sluggish”; we all experience the tiredness that comes after exerting ourselves, but PEM causes you to continue feeling tired and lethargic for longer than you should, based on whatever activity it was that you did, and to even feel increasing exhaustion even though the activity has been stopped; this experience lasts for at least 24 hours after the activity; you just can’t shake the exhaustion; it sticks to you and settles in rather than dissipating as it should
Pain–the muscle and joint pain as well as headaches experienced by CFS sufferers are very similar to that endured by FMS patients, though on a lesser scale than with FMS while still more than the average person; for more on how such pain feels, see the description of FMS pain in the post “Fibromyalgia Syndrome–How It Feels”; for CFS, joint pain seems to be most prominent
Unrefreshing Sleep and Sleep Difficulties–this aspect is fairly straightforward to describe; unrefreshing sleep is when you still feel as tired after sleeping as you did before going to sleep; you do not feel rested or refreshed and it’s as if you didn’t sleep at all; other sleep problems CFS sufferers encounter are difficulty falling asleep and/or staying asleep and inordinate sleepiness during the day
Cognitive Difficulties (Brain Fog)–the short-term memory, concentration, and complex thinking problems that CFS patients deal with is just like the brain fog (fibro fog) felt by those with FMS, though sometimes more severe in the case of CFS; for a description of brain fog, see the post “Fibromyalgia Syndrome–How It Feels”
Flu-like Symptoms–if you’ve had the flu, than you know what this feels like; I’ve never had the flu, but I know its usual symptoms and any, or even all, of them can afflict a person with CFS; these include achy joints and muscles, fatigue, sore throat, runny nose, headaches, chills, and fever; all of these might occur, yet no flu virus will be found in your body; I find this to be a very odd and unusual symptom (if there is such a thing for sufferers of chronic and uncommon illnesses) and if not for this symptom, I would be convinced that I have CFS rather than FMS, but who knows…
I hope that this post helps healthy persons to better grasp the challenges faced by those with CFS and understand the tangible and real effect it has on a person’s life and abilities. I also hope that those who suffer from chronic fatigue are helped to fight the self-deprecating feelings of uselessness and inadequacy that this symptom often causes.
If you are a chronic fatigue syndrome sufferer, please feel free to share your experiences with and thoughts on the disorder below!
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Chronic Fatigue Syndrome–Definition and Symptoms

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What Is It?

Chronic fatigue syndrome (CFS)–aka chronic fatigue and immune dysfunction syndrome (CFIDS) aka myalgic encephalomyelitis (ME)–is an illness characterized by intense, deep, and persistent fatigue and exhaustion. Definite immune system abnormalities have been found in the majority of CFS patients, hence the alternate names (“myalgic” = of or relating to myalgia, which is muscle pain; “encephalomyelitis = inflammation of the brain and spinal cord, usually due to viral infection).

About 1 million, less than 1%, of Americans have CFS, and among them, more women are affected than men. The cause is unknown–though current thoughts trend toward infection, immune disorder, or neurological disorder–and there is no cure. CFS produces some similar symptoms to fibromyalgia syndrome (FMS) and the two often occur together, but there are differences.

What Are the Symptoms?

A syndrome is a set of symptoms that occur together, indicating the existence of a particular disease. Therefore, chronic fatigue syndrome most commonly presents the following set of symptoms:

  • as stated above, overwhelming, persistent fatigue
  • post-exertional malaise–disproportionate exhaustion lasting at least a day after mental or physical exercise
  • pain–muscle pain; joint pain without swelling or redness; headaches
  • unrefreshing sleep; sleep difficulties
  • impaired memory and concentration; brain fog, cognitive difficulties
  • frequent or recurring sore throats
  • tender and/or enlarged lymph nodes in the neck and armpits
  • other flu-like symptoms

Additional symptoms (and disorders) that often occur along with these are:

  • gastrointestinal problems
  • allergies and sensitivities to foods, odors, chemicals, medications
  • depression, mood swings, irritability
  • visual disturbances (blurry sight, light sensitivity, eye pain)
  • dizziness, balance problems, fainting; difficulty maintaining an upright posture
  • chills, night sweats
  • gynecological problems, including PMS
  • chronic inflammation of the bladder wall (interstitial cystitis), chronic pelvic pain
  • temporomandibular joint disorder (TMJ)

I think what really sets CFS apart from FMS are the flu-like symptoms that often precipitate and accompany the illness. If not for a lack of these flu-like symptoms, I would believe that I have chronic fatigue syndrome rather than fibro. But who knows. I could even have both, which is called comorbidity–the simultaneous presence of 2 (or more) chronic medical conditions in 1 person. Many fibro and CFS sufferers can attest to having comorbidity.

Are you a CFS sufferer? Do you experience comorbidity? How do you cope?

Forced Hiatus

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I have been forced to go on hiatus (or hibernation, really) for the past couple of weeks because of a flare-up of fatigue. It’s times like these when I wonder whether or not I have Chronic Fatigue Syndrome, whether instead of FMS or along with it. I often consider this muscle-withering, spirit-sapping, energy-eradicating, and brain-muffling fatigue to be much worse and more difficult to deal with than the pain. At least with the pain, I have a chance to work through it or maybe only experience a flare in one body part. But with fatigue, my whole body is encased in and weighed down by exhaustion. And depression and lowered self-worth soon follow. They say that misery loves company. Well, so does fatigue! I finally broke down last night and cried a bit. But my husband was there and comforted me and reassured me how much he appreciates and values me and everything I do for him/us. Nonetheless, I still feel fairly useless…

But, I know better than to become mired down in such negative feelings because not only do they not make the situation any better but also emotional stress leads to increased pain and fatigue, which I DEFINITELY do not want to happen. So, my husband and I have resolved to have a frank and proactive discussion about adjustments we can make to make weekdays easier for the both of us. And hopefully, my appointment with the rheumatologist, which should be set up soon, will give me some options for treating my fatigue.

I also have trouble with this particular symptom because when it’s this bad, I can barely get out of bed to manage my basic needs. The cycle of negative thoughts and self-image is perpetuated by this lack of self-care and further feeds the depression and fatigue and inactivity.

How can I fix this or help myself do better during these times? Well, I have noticed recently that sometimes when I’m fatigued but still attempt to do something I need to get done, I don’t feel much more tired afterwards as I always expect to. Part of what prevents me from getting out of bed is the fear that activity will only make me feel more tired and worsen my muscle aches and soreness. But in such instances as the one mentioned before, I know this not to be true, at least most of the time. So, I’m determined to train myself not to have that negative mentality and to make myself accomplish one good, useful thing a day. And when my “fatigue-self” protests, I can tell it that I have all the rest of the day, hours, to “recuperate” from the activity and so it shouldn’t complain!!

Plus, accomplishing one activity usually spurs an emotional boost, which can give one the motivation to get something else done. But as long as you only focus on one thing at a time, you aren’t overwhelmed and bogged down by the stress and pressure of all the myriad chores, errands, and activities that you need to do.

I think that the first step to overcoming fatigue that you can do on your own, is re-train your thinking and stop negative thoughts in their tracks. Give yourself credit for even the littlest things you have been able to accomplish and focus on one thing at a time. Doing this helps me to not feel so overwhelmed and I’ve just gotten away from it lately. Also, do things that help take your mind off of your inactivity–read an exciting book, watch an uplifting show or movie, do a hobby (like crocheting) that does not require the use of your entire body–and help keep you encouraged and positive. Prayer and spiritual reflection comfort and strengthen me while reading dramatic sci-fi novels, watching British mystery shows, and crocheting help to distract me. What successful steps have you taken to stem the effects of fatigue?

Fibromyalgia Syndrome–How It Feels

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Giving you a list of fibromyalgia symptoms doesn’t really give you a sense of what the symptom really means for someone or how it feels to them. The way it feels to each person can also vary, so I think it’s a good idea to describe how some of the symptoms of fibromyalgia can feel.

Widespread Pain–such pain can present itself in many ways and a person can experience it in multiple forms as well, as I do; the pain usually is over the whole body but its intensity fluctuates daily and the pain in one area can worsen more than in other areas; the pain can feel like aches, soreness, throbbing, stabbing, shooting, sharp, burning, dull, deep; those words are the best adjectives to describe the pain, but they still may not be accurate because, for example, my general all-over pain comes closest to soreness, but it doesn’t feel the same as the muscle soreness you get from working out or something; I also experience sharp and stabbing pains, dull aches, and occasional burning in various spots on my body

Fatigue–this can be difficult to explain…; generally, fatigue is exhausted times at least 5, a deep weariness in your body and mind; for me, it seems inescapable as no matter how well (usually not well) or how much (usually only a little at night) I sleep, it is still there with me, like a heavy barrier between me and the world; the level of fatigue fibromyalgia sufferers endure is usually on par with chronic fatigue syndrome (CFS), and for some it actually is CFS

Tenderness/Sensitivity to Touch–think of how it feels to have a bruise:  not only is it more painful to the touch than the rest of your skin, but also you are more aware of that area than the rest of your skin/body; in this way, so does it feel to be tender and sensitive to touch; everything hurts and feels more painful than it should; I’ve always felt as if everything I feel or touch is interpreted by my brain as pain, to some degree; my other external senses–hearing, sight, and even smell–are also extra-sensitive, sometimes making me feel like a superhero, if not for their interference in my physical comfort and ability to fall asleep; some people can’t even stand to wear tight or form-fitting clothing like jeans or pantyhose; another aspect that falls into this category is the tender points on the body that are used to semi-diagnose fibromyalgia; this means that in particular there are specific spots on the body that, when touched or subjected to pressure (such as by poking), hurt even more extremely than the fibro pain; my worst spots are in my neck, shoulders, collarbone, lower back, hips, and buttocks; related to this symptom is hypersensitivity to cold or heat, which is essentially the same as sensitivity to touch but with temperature; I deal with sensitivity to cold temperatures, particularly the cold air produced by air conditioning; when cold drafts hit my body, I immediately experience an increase in pain and my muscles begin stiffening up

Brain/Fibro Fog–in addition to the concentration, memory, and speech difficulties, it actually feels like there is a fog in or around your mind that makes it work less efficiently and makes things less clear to you; one source mentions “word-finding” difficulties, something I have intimate experience with; these cognitive speed bumps are made more severe by fatigue and especially increased pain, and mine also worsen with hunger; imagine the confusion, slower thinking ability, and lack of focus that accompany the grogginess experienced after you’ve just awakened or if you’re exhausted, multiplied by 10; an example of the memory problems I experience is that I can ask my husband a question, get his answer, and go about my business, but when the topic or related activity comes up again 20 minutes later, I’ve forgotten that I already asked him about it

These are the main hallmarks of fibromyalgia syndrome. The other symptoms that may or may not occur along with these are problems that commonly afflict people and are well-known so I won’t get into those. A good analogy for describing just how chronic pain impacts a person’s life is The Spoon Theory narrative written by Christine Miserandino over at butyoudontlooksick.com and I encourage you to check it out. I hope that this post further helps you to understand what it is like to have fibro and therefore show more consideration to those who you know that have it. And anyone who does have it, feel free to add your own descriptions and illustrations below!