Why am I so tired all of the time? Am I pushing myself too hard and am just tired from all of the activity? Or is it something bigger like Myalgic Encephalomyelitis or Chronic Fatigue Syndrome (ME/CFS)? How do I know the difference? In this article, we’ll break down the difference between the two, help you find the answers you’ve been looking for, and give you resources to learn more.
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Chronic Fatigue Syndrome can be called Myalgic Encephalomyelitis, ME/CFS, or Systemic Exertion Intolerance Disease (SEID). For simplicity in this article, we will use Chronic Fatigue Syndrome, CFS, or ME/CFS.
My Story with Chronic Fatigue Syndrome
I was an elite athlete back in my 30’s. I raced Xterra triathlons and raced mountain bikes and rock climbed. I was a fitness junkie. I had abundant energy, but would always say “I’m tired” or “I’m beat.” But it was a good tired. Like… I was productive at work all day and had energy to work out and had an awesome day and was tired kinda tired.
And then breast cancer and Hashimoto’s happened, which kick-started the chronic fatigue. It was a 1-2 punch that knocked me on my a$$. Literally.
It was a whole new world of tired.
It was a whole new world of exhaustion.
I would sleep 8, 9, 10 hours a night and wake up feeling like I never slept.
I would walk around all day in an exhausted fog that felt like a hangover. Only I don’t drink anymore.
It was an exhaustion that physically hurt.
It was an exhaustion that caused me to pray that I would drive safely home from work without falling asleep at the wheel.
I never knew on any given day how much energy I would wake up with.
I had to cancel plans all of the time and eventually stopped making them.
My doctors told me that I was tired because of cancer/chemo.
My doctors told me that the fatigue was because of the Hashimoto’s.
My doctors told me that having Hashimoto’s wasn’t causing the fatigue that it was something else.
My doctors told me that I was depressed.
My doctors told me to sleep more.
My doctors told me to sleep less.
My doctors told me to exercise more.
My doctors told me to exercise less.
The management where I worked told me to drink more coffee.
The management where I worked said to stop complaining that until I had 3 kids I don’t know the meaning of tired.
The management where I worked said I was faking it.
I felt like no one was taking me seriously. I felt like no one believed me. I never actually received a diagnosis of ME/CFS. My doctors either shrugged their shoulders or sent me to yet another doctor.
It was unbearable exhaustion that is impossible to explain. Unless you’ve gone through it yourself.
As much as I hate saying this, cancer was a picnic compared to dealing with ME/CFS.
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What is Chronic Fatigue Syndrome?
Chronic Fatigue Syndrome, also known as Myalgic Encephalomyelitis (ME/CFS) or Systemic Exertion Intolerance Disease (SEID) affects approximately 2.5 million Americans. It’s a disorder that is complicated to diagnose and frustrating to live with.
While anyone can have ME/CFS, it’s most common in women between 40-60 years-old. According to a report by the Institute of Medicine, an estimated 1-2 million Americans suffer from ME/CFS and approximately 90% of people with ME/CFS have not been diagnosed.
In a nutshell, ME/CFS is characterized by extreme fatigue that can’t be explained by a traditional medical disease. One of the key differentials is when fatigue gets worse with exercise or physical activity.
Many who have ME/CFS may be bedridden, especially after physical activity. While fatigue is the main complaint, there are other symptoms that may coexist.
What Causes Chronic Fatigue Syndrome?
The cause of ME/CFS is unknown.
The medical community does not have a specific test to confirm a diagnosis. Diagnosis may come from a variety of bloodwork, tests, and ruling out other health issues. Experts attribute possible factors such as viral infections (like the Epstein Barr Virus), immune/autoimmune conditions, stress or trauma or hormonal imbalances.
It’s difficult to diagnose, impossible to test for, and is why many doctors dismiss patients who complain about this type of extreme exhaustion.
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Is it ME/CFS or am I Just Tired?
The biggest differentiator is the post-exertion malaise. Do you need a nap after going for a 5 or 10-minute walk? Are you exhausted after taking a shower or going to the store? Does one day “out and about” make you bedridden for the next few days? If simple and everyday activities cause extreme fatigue, it is possible that it’s Chronic Fatigue Syndrome.
That is the biggest differentiator between ME/CFS and just being tired.
Non-refreshing sleep is another factor. If you are just tired and get a good night’s sleep, you wake up refreshed the next day. With ME/CFS, you can get a “good night’s sleep” and still wake up exhausted.
Work with your doctor to rule out other possible health conditions such as anemia, heart issues, viruses, Lyme Disease, and more.
More Chronic Fatigue Resources You Will Love
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Love, hugs, and taking a long nap.
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