When I talk about my health on this blog, I sometimes call my illness by different names. Here’s why.
1. ME vs. CFS
In the past couple years a lot of people have started using the terms ME (standing for Myalgic Encephalomyelitis) and CFS (standing for Chronic Fatigue Syndrome) interchangeably. I’ve met people who say all CFS patients have ME. I’ve read literature that explains how only some CFS patients have ME. It seems like, as of right now, everyone I talk to has a different opinion. It tends to be a hot topic in this little chronically ill world of mine. Personally, until someone actually figures out what’s going on in my body and has a way to fix it, I really don’t care what they call it. So when I first started writing about my health, I used to just use CFS. Now I feel like I should use ME/CFS so more people can find it as they search for information. At this point in time, I pretty much consider them interchangeable (though that might change if an official source tells me otherwise).
2. ME/CFS vs. POTS
I’ve been diagnosed with both CFS and POTS. These two are not interchangeable, though they are often diagnosed together. To be diagnosed with CFS a patient must have 4 of the following symptoms:
- post-exertion malaise lasting more than 24 hours
- unrefreshing sleep
- significant impairment of short-term memory or concentration
- muscle pain
- multi-joint pain without swelling or redness
- headaches of a new type, pattern, or severity
- tender cervical or axillary lymph nodes
- a sore throat that is frequent or recurring
The diagnoses process is still pretty open ended because, frankly, medical science doesn’t know much about ME/CFS yet. They know something is making people so sick they can barely function… and that’s about it. Personally, I would bet what we currently classify as CFS isn’t caused by one thing- the range of symptoms is just so wide (I mean, I could have the top 4 and my friend could have the bottom 4 and we’d be diagnosed with the same thing. Seems a bit crazy). I think there are several illnesses that we just don’t know about yet, but that stress the body out so much that it gets super tired.
POTS (Postural Orthostatic Tachycardia Syndrome) is diagnosed in a completely different way. They give you a Tilt Table test, where you get strapped to a table that lifts you up and holds you at a certain angle. And then you sit there without moving while they monitor your blood pressure and heart rate. If your heart rate goes up without increasing your BP, you’ve got POTS. If that doesn’t happen, then you don’t. Very scientific.
While they are diagnosed with very different methods, they overlap quite a bit in symptoms. When you have POTS, your heart has to work super hard to do normal functions. It gives you post-exertion malaise. Your body gets so overrun that sleep is no longer strong enough to be refreshing. Blood often has a hard time getting to your brain, forcing your thoughts to be muddled. Circulation is bad, causing pain in your feet and hands…
Notice how with just my POTS symptoms, I also qualified for a CFS diagnosis? The jury is still out on what exactly that means. Does my POTS cause all my fatigue? Is my fatigue caused by CFS and my heart issues caused by POTS? No body knows yet.
Personally, when I talk about my health I typically talk about POTS. I am the daughter of a medical scientist, and everywhere I turn there’s a brother or uncle or cousin with an MD. We like dealing with cold, hard facts data, which makes me lean towards my POTS diagnosis since I can be 100% sure I have it, and can explain scientifically what that means.
However, since I’ve been sick I’ve met so many people who are just as sick as I am (or much worse), but don’t have a definitive diagnosis like POTS to back it up. For that reason, I stick with my CFS roots and try to spread awareness. These people have lost everything to an illness, and most people they talk to don’t even believe it exists. That’s no good.