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How I Got Diagnosed With Chronic Fatigue Syndrome

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Chronic fatigue. It sounds like something we’re all experiencing, right? It seems like everyone is functioning on too little sleep, getting by on fumes, hitting the weekend too tired, stressed, and worn out. Fatigue seems to be an epidemic. And yet, when I talk about chronic fatigue syndrome, I’m talking about a whole different animal.

It’s hard to clarify for those who haven’t experienced it the difference between the fatigue that most adults are functioning with and what living with chronic fatigue syndrome (CFS) is like. The name betrays the significance of the actual condition. This isn’t simply being tired all the time, this is bone-weary, joint and muscle pain, extreme exhaustion that remains unchanged with sleep, and sleep is often elusive. For most of us, CFS is accompanied by additional symptoms of the illness like swollen glands, sore throats, headaches, cognitive difficulties, fevers, night sweats, and difficulty recovering from any kind of exertion. For me, it feels a lot like an unrelenting flu.

When my wife was in the last months of grad school, she got mono. After taking a short time off, she pushed through the illness in order to defend her portfolio and finish her degree. Then, I got mono. It was an inopportune time for me to take much time off work so I took a week off to recover and tried to go back. After working a few days, I had to take several more days off to rest and recuperate. Mono typically takes about a month to recover from and I didn’t have a month to be sick — I had things to do.

I pressed on and the illness pressed back. I was still taking days off here and there to try and catch up on rest and reset. After six months of attempting to drag myself through my days, I hit a wall. I couldn’t keep coping. I was going to bed as soon as I got home from work, I was barely making it through my days, I fell asleep one morning at a stop sign driving to work. I was crying each day as I was leaving for work because I could barely function. I would have to rest while getting dressed. My wife was packing my lunch, making my breakfast and coffee, and everything else she could do to prop me up and get me out the door, and still, I could hardly cope.

I returned to my doctor and told her what was going on. My doctor told me that I was now experiencing the symptoms of CFS. When fatigue to this degree persists for more than six months, CFS is a possibility. She referred me to an infectious disease specialist and had some lab and imaging work done. The infectious disease doctor did a comprehensive background study on me in addition to running a number of tests and blood panels. We talked at length about my medical and family history. When discussing my recent bout with mono, he explained that mono can be caused by one of three viruses. The blood work showed that I’d been exposed to the Epstein-Barr virus and that was likely the genesis of my mono. There was also reason to believe that the virus was still active, that my body was still trying to fight the virus and that was why I wasn’t feeling any better. I hadn’t seemed to recover from the mono. My body hadn’t recovered.

With this information, my primary care doctor recommended that I take four to six weeks off work. I applied for short-term disability to allow myself to rest and try to let my body recuperate and fight the virus. It was so hard to admit I needed the time and to ask for short-term disability. It was incredible those first few days when I didn’t have to pry myself from the bed, crying, feverish and sore, trying to function when I didn’t have any physical resources to give. During this time, I could fall asleep mid-sentence while talking to someone. It was such a relief to be able to stop and just rest. However, at the end of the six weeks, I wasn’t any better. I went back to work and was living the same waking nightmare I had been before I took the leave. Taking the time had not equaled recovery. I was heartbroken by this reality.

Returning to my doctor, she confirmed that my diagnosis was now chronic fatigue syndrome and she recommended that I stop working. Stop working? How could I stop working? That’s a whole different post, but it had now been a year since my initial mono infection, and I was in worse shape than when it began. I was so fortunate to have a primary care doctor with experience and knowledge about CFS – she even calls it by its more accurate, if lesser-known name, myalgic encephalomyelitis. She believed me from the beginning and took my symptoms seriously.

In addition to the evidence-based information we gleaned from the tests she and the infectious disease specialist ran, she used the preponderance of evidence to make her diagnosis. Because there is no test for CFS, it is largely a diagnosis of exclusion — rule out what it isn’t and then see what is left. In my case, I am fortunate to have practitioners who listened, believed me, and got me the care I needed to address my situation and continue to provide treatment for my chronic illness. What about you?

Getty image by Khosrork.

Originally published: September 7, 2020
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