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Myalgic Encephalomyelitis Is a Lot More Than Just 'Chronic Fatigue'

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I have myalgic encephalomyelitis, or ME.

You’ll probably know it as chronic fatigue syndrome, the much easier to pronounce but more misunderstood and stigmatized name.

Yes, I’ve tried most miracle multivitamins I’ve been recommended, I don’t pull all-nighters streaming Netflix every night (as much as I wish I could!), I have had blood tests testing for pretty much every condition you can think of, seen naturopaths, had countless tests including lumbar punctures, about 10 MRIs, tilt table tests, autonomic nervous system tests, about five echocardiograms, stress tests, holter monitors, a few ultrasounds, x-rays on my various aching joints, EEGs, all types of eye tests and numerous hospital stays with few answers.

In my experiences, I have found my diagnosis to be one where I am brushed off as “lazy” or “unmotivated” or just “going through a bit of a teenager thing” (for six years…what a phase!). I am embarrassed to tell my condition to friends and usually just say I have dysautonomia “as well as some other stuff,” as explaining why I am unable to regulate my body temperature, sweat, have a resting heart rate of over 160 off medication and have dropping blood pressure to where I pass out is taken a lot more seriously than just “being a bit tired.” Plus, we learn about the autonomic nervous system in class, what a bonus!

I have also found that when explaining my symptoms to doctors I am told it could be because of psychosomatic reasons or that I’m depressed. I’m referred to psychologists, who then discharge me saying I am not mentally ill and they have no reasons to continue seeing me. I’ve found that when discussing this with friends who have CFS/ME, they’ve found “it’s all in your head” to be a common answer given to young females.

So what I’m trying to say in all of this is that chronic fatigue syndrome or myalgic encephalomyelitis (I’ve had the terms used interchangeably in my case) seems to be a diagnosis of exclusion. It is often the answer given when there are simply no other answers. It is also a difficult diagnosis to share with others as you fear you may not be taken seriously, be questioned further or be told that their best friend’s brother’s aunt’s second grade teacher was tired often too and found some magical cure – I do appreciate suggestions, it’s just sometimes a lot more complicated!

I am tired. We all get tired. But chronic fatigue syndrome is so much more than that – it can involve muscle aches and pains (many are diagnosed with fibromyalgia as well), brain fog (how does someone forget their last name?!), poor concentration, swollen lymph nodes, these mysterious sore throats, “crashing” bed-bound for long after doing any kind of physical activity (this can last weeks), headaches, light sensitivity, noise sensitivity, dizziness, nausea, sweating, loss of appetite and so many others!

Chronic fatigue syndrome is often a diagnosis of exclusion. There is no current blood test or current diagnostic test for CFS. I know several people who have been misdiagnosed with it. There is every chance that someone with CFS might have something else! For me, having a diagnosis of chronic fatigue syndrome has felt the same of the 18 months I spent undiagnosed. Perhaps there is another reason I have had these symptoms for over a third of my life… or I might have some super rare condition that nobody has picked up on yet. CFS has never felt like a true answer for me.

Chronic fatigue syndrome/myalgic encephalomyelitis affects everyone differently. Some are so mildly affected that they never receive a diagnosis and are able to do all of their daily tasks with little difficulty, but some (an estimated 25 percent) are housebound or bed bound for long periods of time. This can be decades. I am often scared to share my diagnosis, even with my chronically ill friends, as I worry they will just think I’m whining about being a bit tired!

Chronic fatigue syndrome/myalgic encephalomyelitis/systemic exertion intolerance disease has been in my life for the last six years. I am not lazy! My symptoms are real! I’m not tired… OK, I am tired! But CFS is a lot more than that. I ask that you please learn more about CFS/ME and learn how much people’s lives can be affected by “just a little bit of fatigue.”

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Thinkstock photo via ValentinaPhotos.

Originally published: October 13, 2017
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