Postural orthostatic tachycardia syndrome: when dysautonomia misleads: a mechanistic argument for compensatory orthostatic tachycardia, 2026, Chopra

[DHagen]

.I am also a bit doubtful that bulging superficial veins would matter much. My guess is that the blood volume in the legs depends much more on deep veins, which are invisible. After a hot bath it is common to have prominent superficial veins and high skin colour but that doesn't seem to affect heart rate.

And, as we have discussed at length here, OI in ME/CFS does not seem to be that well correlated to POT.

Speaking for myself, the bulging veins are wildly out of proportion with what might be expected - yes, everyone, particularly as they age, will get some degree of visual difference with a small amount of blood pooling and veins dilating based on posture, temperature, etc, but this is not what I am talking about.

Again, speaking only for myself, the change in venous appearance and function was dramatic, rapid, and corresponded 1:1 with my deterioration. Nor is it merely superficial: ultrasound was able to document significant reflux in the deep veins. The same dramatic changes and valve failures are visible pretty much everywhere throughout my body: arms, legs, lower abdomen... I would be shocked if these failures were not truly system wide. At the time that I had the scan on my legs performed, the technician told me that, post-covid, she sees several people 40 or younger per week with similarly faulty blood vessels - no idea if that is accurate or not, obviously.

If what you say is true, and this isn't a common feature of ME/CFS (or LC, or whatever), the fact that, for me, these manifestations were so dramatic and so perfectly mirrored my deterioration, then I think I need to seriously question whether ME/CFS is actually what I'm dealing with.

But I have ventured far off topic. Thanks for the response. If I can organize my thoughts I shall see about starting a new thread (or locating an appropriate old thread).

 

[Felis Catus]

I also have blood pooling and my feet turn purple. Initially I didn't realise how bad it was until I tried to wear my fancy shoes to see a doctor. They were too small. I've had POTS/OI issues since the infection which triggered ME/CFS and the aforementioned appointment was soon after.

 

[Jonathan Edwards]

Nor is it merely superficial: ultrasound was able to document significant reflux in the deep veins. The same dramatic changes and valve failures are visible pretty much everywhere throughout my body: arms, legs,

This is where it all gets so hard to judge. I don't think autonomic failure would lead to valve failure. A proportion of people have valve failure - I guess a big enough proportion for quite a few people with ME/CFS to have it by chance. I wouldn't be surprised if the effects of OI on daytime posture led to a tendency for that to lead to more obvious signs of venous stasis in people with ME/CFS but it wouldn't imply dysautonomia.

I am not doubting what you report but this is an area of medicine where popular explanations are often wrong.

 

[ScoutB]

But I have ventured far off topic. Thanks for the response. If I can organize my thoughts I shall see about starting a new thread (or locating an appropriate old thread).

Yes, I wonder if mods would be willing to move these posts to a new thread, or they could be combined with this quite old thread for instance? (I'm never sure if I should just start posting in the new thread or if that makes it more work somehow.)

I have looked into this several times before because, like DHagen, it was a very clear physical change for me. (I think it's going to be hard to explain how obvious it is if you haven't experienced it. On the outside it just looks like veins at the far end of normal dilation. But one has a sense of when and how much their veins expand. I am very familiar with it happening after hot showers, during hot days etc., and I'm used to the difference raising or lowering your limbs can make. I had never experienced veins bulging this widely, to the point of being itchy and uncomfortable, and I wasn't used to them doing it continually all day, while I was just sitting around in a normal temperature room).

I'm not claiming this is a general symptom. Or caused by histamine or whatever's popular. I'm not really claiming anything other than it was so visceral a change I can't help but be curious about it.

Anyway, these were a few reports I found in the past by people who seem to think they might've experienced something similar.

• This person on the LC subreddit uploaded some pictures, the fourth pic shows veins pretty similar to what mine do.
• This woman posted a photo of her arm, and to be fair she's vein-maxxing by holding it low, but she's saying this is unusual for her.
• Some general comments of people reporting this with LC.

Interestingly, I saw this more on the LC and other possibly related subreddits (EDS, dysautonomia) than the cfs subreddit (could just be due to subreddit size). Mine were at their worst when I first got sick and are less extreme now (though that might be due to stimulants). I saw a few people mention a similar trend in the LC threads. But for you, @DHagen, it sounds like it's been constantly at the same level since it started?

 

[DHagen]

Anyway, these were a few reports I found in the past by people who seem to think they might've experienced something similar.

• This person on the LC subreddit uploaded some pictures, the fourth pic shows veins pretty similar to what mine do.
• This woman posted a photo of her arm, and to be fair she's vein-maxxing by holding it low, but she's saying this is unusual for her.
• Some general comments of people reporting this with LC.

Thank you for sharing these. Yes, the fourth picture in your first link and the woman's arm in the second look a lot like my arms/hands most of the time. If anything, my veins are more obvious and my legs are certainly worse (I do have one area on my left shin that is a little coiled/knotted looking and could be a "real" varicose vein, the others are just very inflated in appearance), and I also have a few around my hips/abdomen below the navel.

Interestingly, I saw this more on the LC and other possibly related subreddits (EDS, dysautonomia) than the cfs subreddit (could just be due to subreddit size). Mine were at their worst when I first got sick and are less extreme now (though that might be due to stimulants). I saw a few people mention a similar trend in the LC threads. But for you, @DHagen, it sounds like it's been constantly at the same level since it started?

Interesting. I did not experience this (or at least, certainly did not notice it) until after I had Covid, but it was quite a few months, possibly a year or more after that things broke down for me and the rapid deterioration/bulging veins appeared.

It is difficult to say whether the bulging veins have remained at the same level - pretty similar I think, but I have lost so much muscle since I crashed and I so seldom see my legs (honestly, I tend to panic or fall into despair whenever I do so them, so they remain hidden beneath sweatpants or under a blanket unless it is absolutely necessary to expose them). The sensation of pooling/inflating/being full to bursting remains more or less unchanged.

Given how precisely my decline and the issues with my blood vessels coincided, I really struggle to imagine that there is no connection between the two.