Neomorph Posted January 13 Report Share Posted January 13 Hi everyone! I had a follow-up with my cardiologist today, after being diagnosed with POTS eight months ago, and she is now fairly certain that I have Raynaud's. My fingers turn white when I'm cold, and sometimes finger/toenails turn blue. Can anyone give more detail about the link between Raynaud's and dysautonomia? My other major symptoms include severe muscle pain and stiffness (even from fairly mild activities... or sitting still) and my ESR is slightly elevated. This is leading my cardiologist to believe there might be some inflammatory process starting in my body that is not related to my POTS. However, this is not her area of expertise. She is referring me to Rheumatology (again...) to hopefully confirm Raynaud's and anything else. I'm wondering if anyone else here has a similar combination of conditions/symptoms and if you have any tips or insight into what could be going on. I was also prescribed fludrocortisone at this appointment, and will stop taking propranolol for my POTS! I am excited for this medication change as I could not tolerate propranolol at night. How have your experiences with fludrocortisone been? Quote Link to comment Share on other sites More sharing options...
Pistol Posted January 13 Report Share Posted January 13 8 hours ago, Neomorph said: Can anyone give more detail about the link between Raynaud's and dysautonomia? Hello @Neomorph. I have HPOTS, Raynauds and Prinz metal angina. They are all related according to my cardiologist, because they all are caused by excessive vaso-constriction. The sympathetic overcompensation from HPOTS causes blood vessels to constrict - with Raynaud's in the feet ( I dont have it in the hands ) and with Prinz Metal angina in the heart ( diagnosed by heart cath ). I also used to take seizures when the vessels in the brain suddenly and severely constricted, causing cerebral hypoperfusion. 8 hours ago, Neomorph said: This is leading my cardiologist to believe there might be some inflammatory process starting in my body that is not related to my POTS. I dont believe it has been proven through studies yet but I know that for a few years now there is a theory about POTS being caused by ( or triggered by ) immune response. They used to think it was auto-immune but now they are leaning more towards the innate immune system. As you may well know, POTS frequently is preceeded by viral infections ( i.e. Long-COVID ). 8 hours ago, Neomorph said: I was also prescribed fludrocortisone at this appointment, and will stop taking propranolol for my POTS! My autonomic specialist as well as my local cardiologist told me years ago that Fludrocortisone is not to be taken with Raynauds syndrome or Prinz metal angina due to it causing vasoconstriction. At least ti is that way in my case because the vaso-constriction causes high BP, and Florinef would worsen that. Quote Link to comment Share on other sites More sharing options...
Neomorph Posted January 15 Author Report Share Posted January 15 @Pistol That is so interesting. As far as I know, I don't have HPOTs. I usually actually have pretty low BP, but it has increased slightly since upping sodium and liquid in my diet. I hope the Florinef doesn't cause severe side effects, as I will be on a very small maintenance dose. I get Raynaud's in my feet and hands. I usually notice it first because my toenails turn purple before I even feel chilled. As for the auto-immune factor, I have heard of the possible relationship with that and POTS. I actually do have a family history of Lupus as well, so that is definitely on my watch list. I did have my ANA tested, and as of now, it is negative. But my understanding is that the ANA can change over time and a negative test doesn't necessarily rule out Lupus? I believe my POTS started with the onset of puberty and my menstrual cycle, rather than a virus, but it has persisted and worsened over time, which is why I think I have something else going on! Quote Link to comment Share on other sites More sharing options...
MaineDoug Posted January 26 Report Share Posted January 26 From Captain “something else going on”! Over the last 14 years I went from athletic to disabled and homebound, from serial diagnosis of RA, the POTS and Dysautonomia, and now Pancreatic disease! My advice is don’t give up demanding answers to explain any abnormalities! Listen to your body. Many providers, somehow ignored all of my pleas for help for years. And now, thanks to their neglect, I’m in a gravely serious situation. If your body is warning you of something “off”, hunt for the cause until the all symptoms, test results or imaging are explained and a treatment plan in place. They’ve seriously injured me by ignoring my textbook case of Pancreatitis. I’m NEVER giving them the chance to harm me again! Quote Link to comment Share on other sites More sharing options...
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