How common is low blood pressure in ME?

[StellariaGraminea]

I always had normal blood pressure before catching Covid, which developed into the health complications of covid + an ME-like picture. My normal for years was 110/70... or occasionally 120/80. After Covid it dropped consistently low e.g. 70s/50s or one memorable time when I felt like death to something like 50s/30s. Bearing in mind all the provisos about measuring blood pressure not being a perfect science, the numbers always represented how awful I felt.

There was an orthostatic element, i.e. much worse (i.e. lower) sitting or standing compared to lying, but still very low lying down. After 6 years it has "improved" to 90s/60s, sometimes 100s/70s, but never returned to my previous normal. Recently the really low BP issues returned again and really incapacitated me (more than usual incapacitation).

I'm wondering how common low blood pressure is generally as part of people's experience of ME?

 

[Peter T]

For much of my ME I had blood pressure in the normal range, now I present as a stereotype unfit elderly man who is overweight with high cholesterol and high blood pressure.

My orthostatic intolerance varies with the severity of my ME, with me at my worst fainting if I stood upright for more than a few minutes, though it has never been formally assessed.

 

[BrightCandle]

For much of my ME I had blood pressure in the normal range, now I present as a stereotype unfit elderly man who is overweight with high cholesterol and high blood pressure.

My orthostatic intolerance varies with the severity of my ME, with me at my worst fainting if I stood upright for more than a few minutes, though it has never been formally assessed.

The same on increased blood pressure and high cholesterol.

My orthostatic intolerance doesn't meet the definition for POTS although I do get variance in heart and blood pressure on moving from prone to sitting and standing its not enough to meet the threshold. Nor the NASA lean test.

 

[Kitty]

I don't know, as I got ill at 17. I was a normal, active teenager with no health issues, so I'm not sure I'd even had my blood pressure taken before the illness.

But I did have low blood pressure for decades. It mostly wasn't symptomatic, even when extremely low. I once had a hospital consultant wanting to admit me because my blood pressure was more typical of a casualty who'd lost blood than somebody going about their day as normal. I shrugged and said "I'm fine, it's just 25º outside."

I'm in my late 60s now and it has normalised, I suppose because people tend towards higher blood pressure as they age.

 

[ahimsa]

I do have low blood pressure but it has never been a problem for me. I believe it is only the *drop* in blood pressure (especially when standing still but also in other upright positions) that causes problems.

My blood pressure has been on the low side all my life. But I never fainted - never even felt close to fainting - before I got ME/CFS and orthostatic intolerance. (I think they are part of the same illness but I'm listing them separately)

And I never had any of the many pre-fainting (pre-syncope) symptoms that I get now such as nausea, lightheadedness, increased heart rate, feeling out of breath, cold sweat/clammy feeling, etc, etc (can't remember the whole list) before ME/CFS.

Before ME/CFS I could stand in line, take a shower, and be upright in any other situation without any symptoms at all. This was true even though my resting blood pressure was always low. In fact, when I was younger (teens) I had a much lower resting blood pressure. I remember being turned away for blood donation once when I was still in college (19 or 20?) because my blood pressure was too low that day (they used to do that as a precaution, not sure if they still do).

Before ME/CFS my low blood pressure never caused symptoms and never stopped me from doing anything. And I did not have any issues with heat causing symptoms. I did not even have air conditioning in my apartment during one of the summers I spent in Tallahassee, Florida. I didn't like it (sweated a lot, took a lot of showers) but there were absolutely no symptoms, just annoyance at sweating through my clothes.

On the tilt table test I started getting pre-syncope symptoms after standing for a few minutes. After about 20 minutes my blood pressure dropped to something unmeasurable and I fainted.

So I believe that the problem, at least in my case, is the drop in blood pressure that comes from upright positions, especially standing still, but also from heat. When it's cold my symptoms come on more slowly.

I believe the difference between heat vs. cold is that the blood vessels dilate in heat (less blood in the core, more in the hands/feet). In the cold the blood vessels constrict more to keep blood from pooling in hands/feet.

I realize there are some folks on here who think blood pressure changes do not cause any of the symptoms of orthostatic intolerance, that there's some other cause. I have no idea what the actual mechanisms are for orthostatic intolerance. But based on my two tilt table tests (fainted both times, sudden drop in blood pressure) it sure seems like the drop in blood pressure while being upright is related to my orthostatic intolerance symptoms. It could be more complicated than that but the drop in blood pressure sure seems like a big factor.

 

[rainy]

was a normal, active teenager with no health issues, so I'm not sure I'd even had my blood pressure taken before the illness.

Same for me. Every time I’ve been tested since it’s been low. The doctor I saw at a rehabilitation centre for ME said he often sees low blood pressure in ME patients.

 

[SugarSquared]

I inherited vasovagal syncope and pre-syncope from my mother. She had it way more than I did when she was younger (losing consciousness when straining on the toilet or throwing up). I had pre-syncope first when I was 14 as a result of menstrual pain. It's happened about 4 times since with the same trigger of menstrual or pelvic pain.

I lost consciousness as a child, but I recently lost consciousness for the first time since then. I was laying down to swap my Nexplanon (birth control implant). The physician injected local anesthetic, and two minutes later, I felt like I was having vasovagal pre-syncope. But then it progressed into me losing consciousness. When I came to, I asked her to measure my blood pressure. She said it was low, though likely was much lower when I fainted. I'm really surprised it happened because that procedure was fine 3 years ago. I think my body was stressed out from leaving the house, and the pain made it peace out.

So, I've had vasovagal syncope which is a loss of blood pressure since I was younger, and it hasn't really increased. My orthostatic intolerance has gotten worse though. When I did an active stand test with my cardiologist, I had POTS with an increased in blood pressure followed by a vasovagal reaction when I felt too bad and had to lay down. I don't know if my POTS is necessarily new though, because there were signs of it before.

As with my dietary intolerances, I believe ME/CFS worsened my pre-existing problems enough for me to notice them.

I'm really interested in the heritability of vasovagal syncope and POTS considering what my mom used to go through. Maybe one day I'll look into the research. I believe I inherited a lot of my health problems from her and some from my dad (though both are functioning individuals unlike me).