This only ever happens a few hours or a day after doing too much. When I fall asleep I am woken by a sensation that feels like my heart feels heave/being squeezed. It's painful enough to wake me up but goes in under a minute of being awake.
I have had severe ME/CFS since 2012, I also have a diagnosis of POTS and have seen a cardiologist who says apart from the tachycardia everything is fine. Personally I think it's when my heart slows down when I'm asleep not enough oxygen is getting around and causes chest pain?
Hi, welcome to the forums! Sorry that you're having these pains.
I'm not sure I can help you at all. But since I was mentioned in the thread I thought I'd at least share my symptoms. It's worth a shot, right?
I've had chest pains as part of my symptoms ever since either the first or second year (not sure which). I'm pretty sure my chest pain is due to the orthostatic intolerance part of my illness but I don't know for sure. I've been sick since 1990.
My chest pains seem a bit different from yours, though. Like yours, my chest pains are associated with doing too much (generally delayed, part of the PEM symptoms, not during or right after the over exertion). But for me these chest pains don't usually happen while I'm sleeping. Or if they do, the pain is not bad enough to wake me up.
I don't know why these chest pains happen in patients who have POTS and/or NMH but here's one theory
( from
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3390096/ )
Raj
et al.[8] suggested the chest pains experienced in POTS are almost never thought to be due to coronary artery obstruction, but may be associated with electrocardiographic (EKG) changes in the inferior leads, particularly when upright. They suggest the left sided heart pain common among POTS sufferers is due to differences in heart chamber pressures, abnormal heart wall motions, and/or nerve damage. However, based on the Qi Fu's study
[21] the chest pain may be associated with reduced blood supply to the heart, hence ischemia, which will result in the angina like chest pain.
I have never found any prevention or treatment for chest pains other than the general treatments for Orthostatic Intolerance(OI) -- various prescription drugs, extra salt and potassium, more fluids/electrolytes, avoiding heat, etc. Plus doing less and resting more.
Here's one web site with a list of treatment options/lifestyle changes for OI -
http://www.dinet.org/index.php/information-resources/pots-place/pots-what-helps
Treating the OI does not fix the root cause but I have never found a doctor who has been able to even propose what that underlying cause might be. In fact, I've had doctors ask me, "What is NMH/POTS/OI?"
Some patients on this forum have tried to find and treat the root cause (e.g., using anti-virals to treat infections sometimes helps reduce the OI). There are several ME/CFS specialists out there with different theories and treatment approaches but I know nothing about that.
The only other thought I had was that my chest pains from OI are usually sharp pains, or sometimes a burning feeling, but usually not pressure or squeezing. So that sounds different from your chest pains.
When I did have chest pain that felt like pressure/squeezing (back in 2007? I think?) it turned out to be a gall bladder problem. Ultrasound confirmed it and surgery fixed it. But those pains lasted a lot longer than what you are describing, were more central (under the breastbone), etc. Still, I thought I'd mention it just in case.