Symptom Presentation in POTS vs ME/CFS?

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I was doing some research and couldn't find a side-by-side list or discussion/descriptions of the differences between the symptoms of POTS vs ME/CFS that overlap (fatigue, pains, OI, nausea etc.) and how to tell which condition causes which (of course i understand it may not always be black and white).
Some background specifics: I suspect I have me/cfs, and possibly pots or something similar (I'm seeing a cardiologist soon, so hopefully I'll get answers on the possible-pots side of it). I've been trying to make a list of my symptoms, but a lot of the symptoms that may be related to my orthostatic intolerance stuff overlap with what i previously labeled as only me/cfs stuff -- does anyone have knowledge of/experience with both and can maybe shed some light on how to differentiate? Or how one symptom presents in both? (ex: headaches in ME vs headaches in POTS)

I'm pretty positive something more than pots is going on, mainly due to the PEM side of and possibly a few oddball symptoms i have, though I've heard pots has some oddballs as well.

Anyone have anything to contribute?
Much appreciated :thumbsup:
 

Pyrrhus

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SNT Gatchaman

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@RyeRyeBread I think I'm similar to you. I have POTS / PEM / fatigue as my primary symptoms, but no pain. Major sleep disturbance, moderate noise hypersenstivity and brief temperature dysregulation have also occurred when things were bad.

I have a suspicion that the majority of ME patients have POTS, but that not all demonstrate the heart rate and blood pressure changes that usually result in a POTS diagnosis from a cardiologist. By this I mean that the recent papers demonstrating reduced cerebral blood flow with standing may be occurring in ME/CFS without an attempt to drive up heart rate etc.

People probably get diagnosed with either POTS or ME/CFS depending on whether the POTS is even recognised and they saw a cardiologist first.

"POTS" may be "ME-lite" or if "full-on ME" the other symptoms may be set aside by a specialist focusing on one organ system. Tongue-in-cheek, the specialists may themselves have cognitive fatigue from the sheer volume of the patient's symptoms.

Extending this thinking further: perhaps there's a spectrum for fibromyalgia, ME and POTS, the majority with a unifying mechanism (of maybe underlying immune dysregulation) but variation in the number of systems affected. The variation might depend on the brain/spine targets of neuroinflammation.

Have a look at Dr. Sanjay Gupta's talk on POTS. It's long but informative and he's everything we could ask for in a doctor. More like him please.

 

Haley

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One major difference I've found is heat intolerance. I used to love summer and the heat never bothered me for the first 5 years of my ME/CFS diagnosis. The heat intolerance is what led me to investigate POTS, because suddenly heat left me puddled on the floor. For me, the other difference is dizziness and nausea - didn't have those until the other POTS symptoms started.

The hard thing is it's very different for everyone. You can always try the extra salt/fluids and compression to see if they help even before you see the cardiologist.
 
Messages
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One major difference I've found is heat intolerance. I used to love summer and the heat never bothered me for the first 5 years of my ME/CFS diagnosis. The heat intolerance is what led me to investigate POTS, because suddenly heat left me puddled on the floor. For me, the other difference is dizziness and nausea - didn't have those until the other POTS symptoms started.

The hard thing is it's very different for everyone. You can always try the extra salt/fluids and compression to see if they help even before you see the cardiologist.
I've always been bad with heat, even before the start of my symptoms:pem:, but I have noticed I tolerate it worse than I used to - but we haven't had enough heat here (that I've been willingly out in lol) to know for sure how it affects me, and to what extent

One issue I've faced when it comes to pulling apart my symptoms/trying to decipher them, is that they all started at the same time.
not the exact minute, but they all started within such a short amount of time that I cannot possibly pick them apart :/
I've had orthostatic intolerance and heart/circulation related symptoms (dizziness, lightheadedness, nausea, need to sit down, fatigue worsening from prolonged standing/walking, black spots/blurry vision, numbness/tingling, HR high upon standing/walking etc.) since the start of my other seemingly-me/cfs symptoms :aghhh:
 

Haley

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I've always been bad with heat, even before the start of my symptoms:pem:, but I have noticed I tolerate it worse than I used to - but we haven't had enough heat here (that I've been willingly out in lol) to know for sure how it affects me, and to what extent

One issue I've faced when it comes to pulling apart my symptoms/trying to decipher them, is that they all started at the same time.
not the exact minute, but they all started within such a short amount of time that I cannot possibly pick them apart :/
I've had orthostatic intolerance and heart/circulation related symptoms (dizziness, lightheadedness, nausea, need to sit down, fatigue worsening from prolonged standing/walking, black spots/blurry vision, numbness/tingling, HR high upon standing/walking etc.) since the start of my other seemingly-me/cfs symptoms :aghhh:
Its hard to pull apart even when the symptoms didn't start at the same time!!!

Over time I've worried less about what causes which symptoms, and more around managing the symptoms. Getting a diagnosis does help with this to an extent, but like everything else, trial and error reigns supreme 🤣