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?

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!

Fibromyalgia Syndrome–Definition and Symptoms

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What Is It?

Fibromyalgia–“fibro” = fibrous, or of fibers, and “myalgia” = muscle pain–syndrome (FMS; hereafter referred to as “FMS”, “fibromyalgia”, or “fibro”) is a musculoskeletal disorder marked by widespread muscle pain. This pain is thought to be caused by overactive nerves in the body overloading the brain with pain signals. Why this condition develops is unknown. The symptoms that characterize FMS are often part or the main feature of other diseases as well, making it easy to misdiagnose. It affects many more women than men as well as middle-aged than younger and approximately 2-5% of the American population.

What Are the Symptoms?

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

  • as stated above, widespread pain; such pain usually occurs in the muscles, but can also be felt in the tendons and ligaments (the soft fibrous tissues), and the joints
  • tenderness, or sensitivity to touch (also considered a decreased pain threshold); this can be experienced body-wide but it is particularly noticed at specific pressure points throughout the body
  • fatigue that is chronic and disproportionate to preceding activity, possibly even debilitating; this symptom also includes low stamina
  • difficulty sleeping and/or getting restful sleep
  • memory and concentration difficulties, often referred to as “brain fog” and sometimes “fibro fog”
  • depression and/or anxiety and mood swings

Additional symptoms that accompany these main ones are commonly associated with FMS but occur in varying combinations:

  • digestive problems such as gastroesophageal reflux disease (GERD), aka acid reflux, and irritable bowel syndrome (IBS)
  • irritable or overactive bladder
  • chronic headaches, migraines, or tension headaches
  • hypersensitivity to cold or heat; skin rashes and irritation
  • temporomandibular disorder (TMJ), which can include face or jaw pain and ringing in the ears
  • muscle and/or joint stiffness, particularly in the morning
  • chronic tension, knots, cramping, weakness, and spasms in the muscles
  • abdominal pain or cramping
  • difficulty with balance and impaired coordination
  • dryness of the mouth, nose or eyes
  • tingling or numbness in the hands or feet
  • weight gain

Personally, I experience all 6 of the main symptoms and 7-12 of the additional symptoms. Any of these symptoms can be triggers for a flare-up of fibro pain. The opposite can also happen, where an increase in fibro pain can make another symptom flare-up, for example sensitivity to touch/tenderness. This sometimes ends up locking into a never-ending cycle, where each symptom is triggered by another and then triggers something else, or just triggers its trigger right back (did that make any sense?). Alleviating just one of the symptoms in the cycle can break it and give you a chance to get results treating the other symptoms, too.

What about you? What’s your personal combination of FMS symptoms?