How do you know?

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How do you know?

When you are diagnosed wit POTS and MECFS, because you have the following symptoms
Fatique
Palpitations
Nausia
Bloating
Poor sleep
exercise intolerance
Headaches
and so on

Heartrate increase and blood pressure rise when standing up and/or moving
Confirmed with a Tilt Table Test

How do you know you have POTS and MECFS, why not POTS alone ?
Symptoms look the same to me

Especially when I read you van try to manage POTS with exercise while this is the worst you can do when you have MECFS
 

Pyrrhus

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When you are diagnosed wit POTS and MECFS, because you have the following symptoms
Fatique
Palpitations
Nausia
Bloating
Poor sleep
exercise intolerance
Headaches
and so on
Those symptoms are not in the official diagnostic criteria for POTS, although some are in the diagnostic criteria for ME.

Here is the official diagnostic criteria for POTS:
The current diagnostic criteria for POTS is a heart rate increase of 30 beats per minute (bpm) or more, or over 120 bpm, within the first 10 minutes of standing, in the absence of orthostatic hypotension.1,2,3,4 In children and adolescents, a revised standard of a 40 bpm or more increase has recently been adopted.4,5

Note that POTS is a common symptom of ME, along with many other types of dysautonomia.
 
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Jyoti

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I would think POTS UK would know
I think they do. If you look at the page you linked to it lists symptoms associated with POTS which ARE all common in people with ME/CFS. If you look at the panel on the lower left, it lists the diagnostic criteria, which are as @Pyrrhus noted. A diagnosis of POTS can't technically be based on palpitations, fatigue, brain fog, orthostatic/sleep/GI problems even when those are prominent features of your experience.

I sympathize with the confusion. I often wonder if I actually have POTS without ME/CFS after all? And you make an excellent point about the exercise issue. I have a neurologist who has a great depth of experience with dysautonomia but he seems to be mired in the dark ages when it comes to ME/CFS. So he endlessly exhorts me to exercise, at peak rate no less. Which, needless to say, is crushing for me if I try to follow his advice. The PEM is monstrous.

Leading me to believe that yes, I have ME/CFS and not just POTS.

Have you been diagnosed with POTS @Sizzle ? Did you have a Tilt Table or Stand Test?
 

Jyoti

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My daughter is diagnosed with POTS and MECFS (mild then, severe now), has al the symptoms listed above and is diagnosed with a TTT, she meets the diagnostic criteria Pyrhuss mentions
I am SO sorry!
I don't know the etiology of her illness, though it is clearly getting worse by the sound of it. I found, and I know others have as well, that the longer I have ME/CFS, the more diagnoses I get. In other words, I am not sure I started with POTS, but within a year or so the indescribable fatigue I had gotten used to changed, sometimes feeling so intense that it was panic-inducing. It took me a while to understand that at those moments, I was not so much fatigued as in dysautonomic pre-syncope--a new development.

Your daughter could have PEM and exercise intolerance, I expect, though being bed bound she might experience either or both from the tiniest of activities, like eating or bathing or brushing her teeth. Hard to tell right now while she is doing so poorly. How long has she been ill?
 
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Hard to say anything about the length of her illness. Symptoms worsened since end of 2020
But there were some symptoms (hindsight) for a couple of years and that's a big maybe
She could do some exercise first half of 2021, when we still thought it was "only" POTS, she didn't have PEM at that time
People can have POTS as a "stand-alone" illness, right?

Thing that triggered me to start this topic is the diagnose she got from dr Visser/dr van Campen (Netherlands) where they said she has MECFS moderate with POTS because of the cerebral bloodflow. They mentioned PEM because of the memory test they did at that diagnose
After the diagnose we read about PEM and it didn't add up at the time

So if she didn't have exacerbation of symptoms after physical or cognitive exertion how did the dr conclude she has MECFS ?
Unless what I realize now the memory issues she had at the time of the diagnose can be linked to PEM?
 

Pyrrhus

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People can have POTS as a "stand-alone" illness, right?
It certainly appears so, but I'm not sure. There is always a lot of confusion when two conditions overlap. o_O
And it can be confusing because a diagnosis can be a symptom and a condition.
e.g. "Headache" is a symptom of many conditions. But "headache" can also be a stand-alone diagnosis...

So if she didn't have exacerbation of symptoms after physical or cognitive exertion how did the dr conclude she has MECFS ?
That's a good question to ask your doctor. :thumbsup:
 
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Wishful

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The term "Post-exertional malaise (PEM)" specifically refers to the exacerbation of symptoms after physical or cognitive exertion.
PEM also commonly has a consistent delay. I had a consistent 24 hr delay. Feeling worse immediately after exertion might be something else. I'm sure there's a good explanation of PEM somewhere, but I don't have it bookmarked. Maybe the PEM subforum should have a sticky titled: "Definition of PEM", or "PEM Explained".
 
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People can have POTS as a "stand-alone" illness, right?
for reference, I was just diagnosed with POTS, still seeking a ME diagnosis.

My cardiologist told me he wouldn't be at all surprised if I had ME or a number of other conditions along with POTS, actually he expected it, since according to him- it is rare to have POTS alone. Idk how medically sound that assumption is, but everyone with POTS that I've heard of has a kajillion other diagnoses, too 🤷‍♂️
 

hapl808

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PEM also commonly has a consistent delay.
Yeah, to me PEM always has some delay. Maybe not consistent, as it has varied throughout the illness, but anywhere from a few hours to a couple days is not unusual for me. Yet I almost always feel better right after the exertion as well - not quite the endorphin rushes I got before ME/CFS, but still a relatively good feeling.
 
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Still trying to wrap my head around this
My daughter was diagnosed with POTS/mild ME.
ME because of PEM which she didn't have at the time(good question for her doctor @Pyrrhus , still have to do this). We questioned the ME diagnose because of the lacking PEM

She could do some exercise without getting PEM, she did have exercise intolerance as expected with POTS
The exercise intolerance got worse so she stopped doing exercise/walking the dog etc
Then, beginning of november, a crash, 24/7 bedbound
In the beginning bedbound, because she was afraid it wouldn't get better, now I'm not sure
We hardly talk (she doesn't want to), only communicate a bit by Discord

And now I thought I had a question, don't know anymore, post this anyway :)
 

Wishful

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She could do some exercise without getting PEM,
PEM is tricky, because it's not necessarily triggered by all types of exertion. I could hike or bike for hours without causing PEM, but climbing a ladder once or washing a window above shoulder level would trigger it. I could shovel soil for hours without causing PEM if I did it the usual way (stomp blade into ground, lift up), but if I used my muscles a different way (stabbing the blade forwards), even a few minutes of that would result in PEM. I think it has to do with muscle damage: using muscles in unfamiliar ways causes microtears, which trigger the immune system to clean up the damage, and those cytokines trigger the PEM. For other people, it may be that general exertion triggers PEM via a different mechanism. I think there may be some people who do actually have ME but don't qualify because they don't have PEM in the standard way. We're all different.