Here’s what my CFS feels like

I am sometimes asked what having Chronic Fatigue Syndrome (CFS or ME/CFS) is like. It’s a question I appreciate, because the illness sounds like what the name says it is: “chronic fatigue.” It’s actually a complex illness affecting the immune system and neurological system that has many, many symptoms. If all you have is “chronic fatigue,” you can’t even be diagnosed with CFS.

CFS has been popping up in the news a lot more lately, because a subset of people who contracted COVID-19 are having lingering, severe fatigue and other symptoms that, eventually, could be diagnosed as CFS. You have to have it for 6 months to get diagnosed, however.

For me, it’s all déjà vu. Like many other people with CFS, mine began after a severe viral infection—mono. If you’re curious about the science behind it, check out this recent study and this one, for starters. Long story short: infection happens, neuroimmune system goes wonky…forever, or for a very long time.

There is no approved cure or treatment for CFS. Trust me, people try everything to recover. Everything. Only a very small number do, and most can’t point to one particular thing that did it. I have had a bit of (erratic) improvement for the past 10 months, and I’m desperately hoping to improve more.

So, I’ll explain what my CFS is like. I write this not as a complaint or a plea for pity—I’m just answering the questions people have had in the past, or may have wanted to ask but didn’t. I’m also very curious about the inside of other people’s lives, and find it comforting to hear about them, too. Even the hard parts.

People with CFS can have a wide variety of symptoms with varying levels of severity over time—these are mine. They just happen to be some of the most common ones. I’ve listed them in descending order by how much they affect my life:

1. “Post-Exertional Malaise.” This is the hallmark of CFS, and it’s not really a symptom—it’s a process. It happens when a person with CFS exerts themselves beyond their current “envelope” (physically, sometimes mentally) and it triggers severe fatigue, weakness, pain, and many other symptoms like the ones I’ve listed below. It can last days, weeks, months. Some feel okay between these “crashes,” while some have ongoing symptoms at varying levels, like myself. I may not know exactly what caused the PEM, and my energy “envelope” diminishes drastically while in a crash. Here’s more science on PEM.
2. Cognitive and sensory problems. This is a really hard one to describe. It’s like someone took a book you were reading, put it in a blender, and then gave it back to you to try and read. Other sufferers call it “brain fog,” which honestly sounds like a pleasant little mist instead of what it actually is. Perceptually, things also get wonky. It’s like wearing weird glasses all the time, or being in a nightmarish video game.
3. Lack of pleasure. You may be thinking “depression,” but this may actually be different than depression, or may only represent a facet of it. I still feel motivated to do things, I just don’t get much pleasure from anything. You know when you step outside and it’s a beautiful day, and the air smells lovely, and you get a feeling of pleasure? When you sit down and let the sun warm your skin? I don’t get that anymore. I can intellectually think, “hey it’s a nice day,” but I don’t get the pleasure sensation anymore. It’s been years since I felt those things. I get a little bit of pleasure from eating tasty things—even though I can’t taste them properly (see #  ). Fortunately, I can also laugh and find things funny, it’s just that pleasure sense that is gone.
4. Loss of smell and taste. Not everyone has this one, but I do and I hate it.
5. Really messed up sleep. Ironically, the CFS is the cause of the messed up sleep, but it can also make fatigue worse. For me it’s like waking up every couple of hours feeling strangely sick.
6. Headaches and chronic pain. Not sure what the heck else to say about this.
7. Restless Leg Syndrome. Creepy crawly sensations in my legs, especially at night. This one is sporadic for me.
8. Digestive tract problems. I get burning and swelling in my abdomen, and sometimes my stomach doesn’t pass food onto the rest of my digestive system quickly enough. I have a couple of food sensitivities. Some CFS patients have many. This has improved quite a bit, and only happens for a few days of every month.

I wish this was a “complete” list, but there are other, more minor symptoms, that I barely have time to notice because of the bigger ones. I hope that, as research into ME/CFS really picks up—especially with the COVID-19 crisis potentially spawning many more cases—we’ll find a cure or successful treatments.

In the meantime, I’m open to any and all questions.