The Pain NP
Region: US
Thursday 03 September 2026 00:20:16 GMT
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Will :
I don't have POTS but have Dysautonomia, so a lot of these I still deal with and more! It's been horrible trying to regulate my autonomic nervous system after being so disregulated! NO giving up though!
2026-09-04 18:29:44
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SuzieBlackNailJournals :
Imagine that with neuropathy after decades of undiagnosed and untreated hEDS. Finally getting treatment for all the symptoms but sadly….damage is done. But I’m still a positive human!!
2026-09-05 02:48:47
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Amanda :
As a pain patient who is now learning how to live with Dysautonomia. I don’t feel like my pain pump works much anymore because of it
2026-09-03 00:31:35
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Vincent :
I'm pretty sure that POTS also causes MCAS; the increase in pressure somehow degranulates mast cells, releasing histamine. I've been having a couple of weeks without POTS when my CSF leak was temporarily patched, and my MCAS was better in the month I had less POTS. I could lengthen the interval between Omalizumab doses. yep POTS can also be caused by low Intercranial pressure 😑 but true autonomic dysautonomia is very very rare according to my POTS professor.
2026-09-03 00:31:45
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Myendo :
the way pain can just hit different when you have a chronic thing is so real 😭 like my fibro sometimes makes me feel pain in places i didn't even know existed. i started logging those weird pain flares in the Endora app, it's an app where i track my daily symptoms and it really helps me see if there's a pattern, cause my brain definitely won't remember💝
2026-09-03 10:22:25
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🐶♿️ FND with ME 📚🐱 :
IST please
2026-09-03 00:29:28
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💜🪻BrowneyedDani🪻💜 :
I LITERALLY just went thru this yesterday!! my pcp made me go to the ER. there, I was fast tracked because of my low BP. then abandoned post IV, prior ACTUAL hydration. I NEVER got the fluids 3 hours later. I pulled my IV & went home. 🤷♀️at least there I could rest & hydrate. I felt like crap in the ER.
2026-09-03 01:13:16
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HeatherPRN4 :
It’s never just pots! Think lupus… sfn Lyme …. Sero negative shrogens
2026-09-05 14:38:54
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Misti :
❤️
2026-09-03 00:55:03
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