top of page

The Contradictions Between POTS and ME/CFS

The transcript can be found under the video.

Maybe you've been recently diagnosed with POTS: Postural orthostatic tachycardia syndrome, but are also wondering if your fatigue is just from POTS or if it could be from chronic fatigue syndrome, also known as ME.

In this video we'll refer to it as ME. So what does this mean for how you should handle your condition? or maybe you have a diagnosis of ME and are wondering if your palpitations have to do with POTS or maybe you have both conditions diagnosed and you're wondering how to best move forward as it seems like the advice given for each of these is contradictory to each other.

In this video I'd like to talk a little bit about this contradiction about how each of the symptoms have different paths forward and how you can make sense of both. If you suffer from symptoms of POTS and symptoms of ME. First, I'd like to give a small refresher as not everybody might be familiar with POTS, so POTS is a form of dysautonomia which means this is disorder of the autonomic nervous system. The branch of the autonomic nervous system regulates functions that we don't consciously control, such as blood pressure, heart rate, sweating, body temperature. Since there's a dysfunction, the body doesn't work so well in regulating these functions.

One of the key symptoms of POTS is an exaggerated increase in heart rate when standing. The other big symptoms are fatigue and brain fog. I remember speaking with the doctor who said that they probably wouldn't diagnose POTS if there was no fatigue involved if it was just a heart beating faster. So that's also interesting to note. How the fatigue goes hand in hand with the palpitations.

General symptoms of POTS might include tiredness or fatigue that interferes with day-to-day life symptoms they go worse after physical or mental effort this is called post-exertional malaise. There might be heart symptoms such as fast beating or pounding heart or difficulty breathing, difficulty concentrating known as brain fog, headaches, sleep problems, digestive problems and things like muscle or joint pain. These symptoms are so widespread as this is a dysfunction of the autonomic nervous system and it affects the entire body.

If you're familiar with ME you might recognize a lot of these symptoms already. There are some doctors that believe that ME, a lot of the cases, might actually be POTS since the symptoms for both of them correlate so much with each other. ME is also a little bit more widely known about than POTS so some people got diagnosed with ME beforehand and then only later on were diagnosed with POTS as awareness has grown, mostly now with long Covid, awareness has grown a lot more about POTS, as many people with long Covid suffer from POTS also.

POTS is generally diagnosed if your heart rate increases by 30 beats a minute or more within 10 minutes of standing, so if you were seated let's say your your heart rate was 85 beats per minute and then you stood up in a shot to 120. Not everyone pursues a diagnosis of POTS as there are very long waiting lists, so people you might very well right now be pursuing a diagnosis but you might be on one of those very long waiting lists to speak with a specialist. Although there has been more awareness about POTS, there's still way too few specialists, which causes these long waiting lists. Similar to ME, POTS can come on after a trigger, such as a bacterial or viral infection or other physical or emotional trauma. POTS also seems to be more common in adolescents with ME than in adults with ME.

I'm curious if this is also the case now with long Covid, as long Covid is affecting people of all ages. So that's a bit about POTS, we'll get to some of the recommendations for it shortly. What is ME? ME is not just fatigue, it's overwhelming fatigue that's not improved by rust it gets the symptoms get worse after any activity whether it's physical or mental, this is called post-exertional malaise, which we discussed a second ago within the POTS' symptoms. Other symptoms include problems with sleep, problems with thinking, concentrating, pain, dizziness.

In a way, diagnosis with POTS is a little bit more straightforward because of the heart rate. There's that 30 beats per minute and it's easier to tell in a way. For ME, doctors will generally consider diagnosing ME, if someone has extreme tiredness that's recently come on, if it's lasted a long time, if it prevents you from doing things you used to do, if it gets worse after activity or gentle exercise. There's also symptoms that might come on such as insomnia or muscle or joint pain, headaches, flu-like symptoms, feeling dizzy, faster irregular heartbeats, etc.

If you have POTS you might instantly recognize these symptoms as many with POTS have them as well. So you could see the connection between POTS and ME quite clearly. There was a study that found that, out of the patients they looked at with ME, 27% of them had POTS, compared to just 9% of the healthy controls that they looked at. There's been a lot more studies, so estimates really vary from 6 percent to 70 percent. Due to POTS being quite common in ME, researchers have called for including autonomic function tests such as the toe table test for people just diagnosed with ME as well, to check if there's any form of autonomic dysfunction like POTS.

Now that we know a little bit more about these conditions, let's look at the recommendations for each and this is where it gets a little bit tricky. When you look at POTS and you, for example, just Google it, one of the first things you might see, other than the salt and the water and the compression, is the exercise.

There's been quite a few studies done on exercise and POTS. Out of the people who complete the specific exercise protocol that's given to them, their POTS does get better, it does improve but the catch is, out of the people who complete it. So it works if you're able to do it, and we'll get back to that in a moment. On the other side of the spectrum, when you look up ME it talks clearly about staying within your energy envelope, pacing and being careful with exercise. The same standard of exercise that other people can tolerate, like a gentle walk can be harmful for those with ME.

So what do you do?

Do you start exercising for POTS or do you start pacing for ME? Not every person with POTS has post-exertional malaise some are able to walk or swim or do activities and they feel more or less okay. But if you have POTS and you feel that after you're exercising you're unwell for days sometimes symptoms come on 24 to 48 hours afterwards where it's like flu-like symptoms or more pain or more fatigue, you might possibly have PEM.

Obviously this is something you need to check with your medical provider on, but it's important to be aware of this if you are trying to start a new workout regimen. For example, the Levine protocol is easily available online, a lot of people might start it on their own, which is perfectly fine, but then they notice that their symptoms get a lot worse.

In the beginning when starting a new workout regimen, it's normal to a certain degree to have a little bit of fatigue and symptoms as the body's adjusting, but if you feel it persists and if you feel it's not just kind of regular fatigue but it feels like more than that, you know, just pay attention to your body and really listen to it as you're undertaking this.

I've spoken people that have pushed through for months, they're trying to do some of these protocols and they had a pretty bad crash and weren't able to get back to their baseline. I don't say this to scare you about exercise just more as an encouragement to really listen to your body, to tune in and to not just push through just for the sake of pushing through, to pay attention. What I've generally found is that pacing in a proper baseline has to be achieved before anything else. So things like the Levine protocol just kind of starting off the gate are incredibly hard to do, really building up to it and building a lot more stability before you get into something like that.

If you feel you can do it of course go ahead this recommended or pause and it works great for those who are able to do it. If you feel you cannot do it, don't be tough on yourself don't bash yourself make sure you have that stable baseline first focus more on the kind of movement that your body is currently able to tolerate, maybe it's stretching in the moment or various light yoga or various bed workouts or various chair workouts, floor workouts, all kinds of things like that, before you kind of push down a little into into going further.

Making sure that you're strengthening your body a little bit before putting that extra stress on it. Really ask yourself what kind of movement can you tolerate now on a regular basis. Exercise is wonderful, it's great for the body there's a lot of great things for your health, but exercise in a way is stress and the body needs to be strong enough to recover from these stress. As we're just thinking about movement, there will be some degree of inflammation that's necessary. When you're exercising, the body like this this is how it's getting stronger it's getting stronger via this inflammatory response to the stress of you working out and then it rebuilds the tissues to deal with future demands.

So in a way, workout regimented session is basically an acute stressor and it initiates this powerful quick inflammatory response. So when you're working out, you have this acute stressful training session but then there's lots of recovery time with slow movement and good nutrition, and this in this recovery time is where the body obviously recovers, but it seems like people with ME this recovery is not happening so well, so it feels like there's this exercise induced inflammatory spike and instead of it going back down, with the rest, it just seems to stay back up.

So it just seems like you're just kind of adding on to this pile. For most people it would be like, they work out and that's the inflammation, then down up down up but for people with this post-exertional malaise it just seems like it kind of just keeps going up, up, up and almost the body's not able to recover, which is why we need to focus so heavily in the beginning on teaching the body once again and getting to that point where it's able to recover.

That's why it's extremely important to learn about both, to learn about both what's happening in the POTS world and the ME world If you struggle, if you're struggling with ME and you kind of dig a little bit more into learning about POTS, you might also find great information there regarding hydration, regarding diet, regarding compression, regarding IVs, regarding movement, not to mention there's medications for the heart rate. In my case, until I was before I went on beta blockers it was practically almost impossible for me to stand up without having any kind of symptoms.

I was not able to walk anymore, I had to even sitting like when I was sitting, all kinds of, any kind of movement or noise made my heart rate skyrocket. It was very, it was very difficult. And as soon as I started taking beta blockers, I was able to walk again and then slowly over many years as I Incorporated movement I was also able to tolerate it a little bit better with the beta blockers and then once my body was strong enough I was able to come off of it. If you have POTS, you could learn from an ME Community a lot on pacing, you might be pushing yourself a little bit too much with movement.

It's a really great thing to learn about each of these two. Obviously there's still a lot that's unknown about both of these conditions so it'll be interesting to see what the research points over the years, but as of now too it's very fascinating to learn from both of them and to see exactly what can I take from this regarding pacing, how can I strengthen my body, how can I have less crashes and then with POTS too, how can I slowly start over time incorporating movement.

So I hope you found this video helpful and that you have a better idea of the interplay between POTS and between ME and what this means for you personally. I would love to hear your biggest takeaway in the comments down below, what's your take on pacing and movement? Are you diagnosed with just POTS, just ME, both?


bottom of page