If you are like me, you don't find tachycardia all that burdensome, even though it is the headlining feature of POTS.
It's the PAIN that is much more irksome, yet rarely discussed.
To get a better picture of POTSy pain, we looked to POTS medical research and also to reports of pain in the POTS Patient-Powered Survey. The chart below shows prevalence of various types of pain from three different sources that all asked patients whether they'd experienced it in the past month. The first source was from Baylor Medical Center, which surveyed 39 POTS patients about their symptoms [1] (read the study here.) The second was from a Danish dysautonomia clinic, where they studied 53 patients with post-vaccination POTS and orthostatic intolerance [2] (read it here.) The third was our POTS Patient-Powered Survey, with 423 online respondents.
Pain (1), 69%, blue Headache (1), 87%, blue Headache (2), 100%, green Headache (3), 93%, red Leg pain (1), 56%, blue Leg pain (3), 75%, red Joint pain (1), 62%, blue Joint pain (3), 82%, red Chest pain/tightness with air hunger (2), 66%, green Chest pain (3), 73%, red Abdominal pain (2), 70%, green Stomachache (3), 81%, red Neuropathic pain (2), 66%, green Burning itching tingling skin (3), 73%, red Painful hands or feet (3), 60%, red
These three different sources seem to agree that there's plenty of pain to go around, and various different kinds. In our findings about "other" symptoms, we listed several additional kinds of pain and discomfort that were written in by POTS patients in the POTS Patient-Powered Survey.
I have not found any other research examining the different types of pain associated with POTS, or the underlying mechanisms. An esteemed pain expert told me the pain probably stems from either poor circulation, inappropriate vasoconstriction/vasodilation (he compared it to a whole-body migraine) or else the underlying causes of POTS, such as Ehlers-Danlos Syndrome (known for being very painful), nerve damage (OWWW!), or autoimmune disorders (causing inflammation.)
Hopefully researchers will study better ways to manage POTS pain. In the meantime, I hope more medical descriptions of POTS mention the pain connection, so that POTS patients will get broader recognition and treatment for pain without fear of being seen as hypochondriacs or drug-seekers.
If you liked these findings, there are lots more here, or you can learn more about us here, on our homepage. Be well!