CFS-Spread Awareness

I will keep this page for simply what it states-awareness. I find as I move more and more towards health my interest has been to remove myself and detach more from any label. I have also found many of the symptoms listed that I used to deal with have dissipated. However, I do think education is important so that more people can become aware, compassionate and diagnoses can be made faster…

When I was so incredibly sick in the beginning, I lay in bed unable to even flip over because of the debilitating exhaustion that had spread throughout my body. I cried because I felt so trapped. It sounds like a drama movie but I specifically remember thinking that night: “Is this what it is like to die?” It truly felt like my body was shutting down and was running on only enough to keep the vital functions of breathing going. Even that was exhausting. Little did I know I had just entered the alternate universe of CFS.

So what is this “CFS?” Well for a list of the many names out there that exist for the bizarre condition, check out my first post.  You can always google and get the generic CDC version “fatigue that cannot be explained for more than 6 months.” The CDC has been highly criticized for their lack of knowledge of the condition and their out of date information. The majority of the medical community doesn’t even really acknowledge it either,claims it’s depression or believe that the condition, as the name reflects, is people being tired all the time. Things are slowly starting to change but not very fast. And of course the pathetic name keeps things moving slowly. As one article from the New York Times put so very well, the name is insulting because everyone has experienced fatigue at some point so it so they assume it must be the same. As the author so wisely puts, if Emphysema was called “Chronic Cough Syndrome,” it is almost guaranteed that people would have little respect for it.

Dr. Nancy Klimas, one of the very few and top researchers in the field who has dealt with both AIDS and CFS patients for years, compares the level of disability to those with AIDS.

“After treating more than 2,000 chronic fatigue syndrome patients over more than 20 years, I’ve seen patients who were angry and frustrated at trying to convince their physicians and loved ones that this is a real illness. They experience a level of disability equal to that of patients with late-stage AIDS and patients undergoing chemotherapy—and now finally they have a powerful voice on their side.” (http://www.prohealth.com/library/showarticle.cfm?libid=129370)

It affects people at all different functioning levels. Some people can work full time but are unable to do anything outside of that. Other people are completely bed bound 365 days of the year. Some need a wheelchair when they are not in bed. A lot fall somewhere in between. I think it’s something like 50% are unable to work full time.

The hallmark sign of CFS is something called Post Exertion Malaise (PEM). This one is rather difficult. Any other illness out there, even horrendous chronic pain conditions, exercise is one of the best things you can do for yourself. Your body is designed to move. But in CFS, exercise does the opposite. In a CFS body, following extra physical or mental exertion, your body takes anywhere between 24-72 hours to end up in a state of the flu. “Graded exercise plans” that were originally always recommended can backfire. Very badly. I have learned that the hard way simply because I think I was in denial, I have always been used to exercise being a great thing!.

A particular frustrating part of CFS is not knowing what you feel like garbage from. Because of PEM, you may feel like garbage on a Tuesday from the extra work on your feet Sunday, from the illness itself, from some bug you picked up or from too much mental exertion the day before, you see how it goes…..

I miss exercise. A lot. Even gentle exercise. I used to be a gym rat. I loved, loved, loved running. I loved interval workouts. I even learned to become content with yoga and walking as my health deteriorated. But that is currently in the past. I have faith my ability to exercise will return. In fact, I have been able to begin a very very gentle pilates based exercise program given to me by my physical therapist. I believe movement is so important when possible.

Other entertaining bizarre symptoms that have come up during this whole thing:

Sensory Overload: The feeling is almost vertigo like (I am sorry for those who really suffer from it) if there is too much stimuli. And this can cause a crash VERY quickly.

What is too much stimuli? This can include too many people in a room, driving for too long, talking too long, speaking in a different language for long periods of time, looking at someone when they are in front of a moving background (standing in front of a window when snow is falling for example) and the list goes on. I thought this symptom was just random coincidences but it is actually one of the bizarre neurological manifestations of the condition (See Canadian definition)

Tons of new sensitivities- foods, chemicals, molds, medications, supplements.
(I tend to have to take children’s doses of medications)

Poor temperature regulation (regardless of thyroid status). At times, I sit in our house in a parka and blast the heater in my room.

Weight changes regardless of eating habits

Random muscle aches and pains

Flu like symptoms constantly

Random Hormone Imbalances

Poor sleep/sleep disturbances (surprising right)

No short term memory. Not just occasional.

AN IMMUNE SYSTEM ON STEROIDS: What!?
I used to get sick all the time, in high school and college, I caught everything that went around. Since I have entered into this CFS state, I no longer “get sick,” I guess because I am basically always sick. I only know that I may have picked something up because I will flare up but not because any legitimate symptoms show up like a cough or runny nose. This is common although some will have a system that completely tanks and leaves them to being sick constantly.

And the obvious: Fatigue. Fatigue that differs constantly. Sometimes it is the fatigue that comes with a full blown mono infection. Sometimes it is just sleepiness (rarely). Sometimes it is the fatigue that needs an hour break. Sometimes it needs days. I don’t like the word fatigue. I tend to use the word exhaustion. I experienced fatigue plenty of times in my life before becoming “ill.” Fatigue you could push through and work through. It would get better if you got a good night sleep. You work your muscles at the gym until they are “fatigued.” But this is fatigue that will knock you down hard. If you attempt to push through it, you will pay for day,weeks or even months. At its worst, it really can cripple you at all levels, literally forming words requires energy your body can’t produce. That is what this so called “fatigue” that the name refers to.

And finally, overlapping conditions that have come with it (whether some of these are separate or just simply part of the same illness is left to be decided). I am a big believer it’s all part of one thing ….the body is out of balance, part of the reason I am not into labels.

Osteoporosis (this is not necessarily common but can be from the sedentary lifestyle, mine is probably attributable to the major hormone imbalances I have and my calcium metabolism malfunctioning at certain points in time)

Hashimotos Disease- autoimmune disease of the thyroid (body attacks it’s own thyroid)-said to be a common overlapping condition in CFS in the literature

Interstitial Cystitis– another one that REALLY deserves awareness. I empathize so dearly for the many people that are truly debilitated by this condition

Irritable Bowel Syndrome- I believe as the criteria for CFS in other countries requires the digestive malfunctions and food sensitives is really just part of the dis-regulation of the nervous system in CFS

I am not a huge advocate or anything like and don’t plan on adding much more info on it outside of this. But I kindly ask you to do the basics.. spread the word when you can, educate someone who doesn’t know about it. Explain what it means. It is estimated over 2 million people in this country have Chronic Fatigue Syndrome. That’s a lot of people. They deserve to at least have some awareness about what ails them. They deserve recognition from their peers, family, the government, doctors and scientists on the level of disability that can occur with this illness. I am blessed that I am not completely house bound and am so blessed to be surrounded by support from my family and many of my friends. Not everyone is able to say the same. At my worst, I couldn’t get out of bed, living in a dark room. So what can anyone do? Just simply educate someone when they ask. Politely correct people that make a snide comment about an illness with such a ridiculous name. Do whatever you think is best.

That is all. Thank You ❤

Here is a NY Times Article written by Laura Hillenbrand, author of Seabiscuit who also suffers from CFS
http://well.blogs.nytimes.com/2011/02/04/an-author-escapes-from-chronic-fatigue-syndrome/

Her most recent: http://www.nytimes.com/2014/12/21/magazine/the-unbreakable-laura-hillenbrand.html?_r=0

Canadian Criteria (more thorough)

Diagnosis

From Table 1: Criteria for the revised Canadian ME/CFS criteria:

Definition of Research ME/CFS criteria
I. Over the past 6 months, persistent or recurring chronic fatigue that is not lifelong and results in substantial reductions in previous levels of occupational, educational, social and personal activities. The concurrent occurrence of the following classic ME/CFS symptoms (See II through VI), which must have persisted or recurred during the past six months of illness (symptoms may predate the reported onset of fatigue).

II. Post-exertional malaise and/ or post-exertional fatigue. With activity (it need not be strenuous and may include walking up a flight of stairs, using a computer, or reading a book), there must be a loss of physical or mental stamina, rapid/sudden muscle or cognitive fatigability, post- exertional malaise and/or fatigue and a tendency for other associated symptoms within the patient’s cluster of symptoms to worsen. The recovery is slow, often taking 2-24 hours or longer.

III. Unrefreshing sleep or disturbance of sleep quantity or rhythm disturbance. May include unrefreshing sleep, prolonged sleep (including frequent naps), disturbed sleep (e.g., inability to fall asleep or early awakening) and/or day/night reversal.

IV. Pain (or discomfort) that is often widespread and migratory in nature. At least one symptom from any of the following:

Myofascial and/or joint pain. Myofascial pain can include deep pain, abdomen/stomach pain, or achy and sore muscles. Pain, stiffness, or tenderness may occur in any joint but must be present in more than one joint and lacking edema or other signs of inflammation.

Abdominal and/or head pain. May experience stomach pain or chest pain. Headaches often described as localized behind the eyes or in the back of the head. May include headaches localized elsewhere, including migraines. Headaches would need to be more frequent than they were before, which would indicate new pattern, of a new type as compared to headaches previously experienced (i.e., location of pain has changed, nature of pain has changed), or different in severity type as compared to headaches previously experienced by the patient.

V. Two or more neurological/cognitive manifestations:

  • Impaired memory (self-reported or observable disturbance in ability to recall information or events on a short-term basis)
  • Difficulty focusing vision and attention (disturbed concentration may impair ability to remain on task, to screen out extraneous/excessive stimuli)
  • Loss of depth perception
  • Difficulty finding the right word
  • Frequently forget what wanted to say
  • Absent mindedness
  • Slowness of thought
  • Difficulty recalling information
  • Need to focus on one thing at a time
  • Trouble expressing thought
  • Difficulty comprehending information
  • Frequently lose train of thought
  • Sensitivity to bright lights or noise
  • Muscle weakness/muscle twitches

VI. At least one symptom from two of the following three categories:

1. Autonomic manifestations: Neurally mediated hypotension, postural orthostatic tachycardia, delayed postural hypotension, palpitations with or without cardiac arrhythmias, dizziness or fainting, feeling unsteady on the feet–disturbed balance, shortness of breath, nausea, bladder dysfunction, or irritable bowel syndrome.
2. Neuroendocrine manifestations Recurrent feelings of feverishness and cold extremities, subnormal body temperature and marked diurnal fluctuations, sweating episodes, intolerance of extremes of heat and cold, marked weight change-loss of appetite or abnormal appetite.
3. Immune manifestations: Recurrent flu-like symptoms, non-exudative sore or scratchy throat, repeated fevers and sweats, lymph nodes tender to palpitation–generally minimal swelling noted, new sensitivities to food, odors, or chemicals.

CDC
http://www.cdc.gov/cfs/symptoms/index.html

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