Wayward_Phoenix Posted May 24 Report Share Posted May 24 Hello, Does anyone have any insights into the following ? For years I have felt sick on and off, this winter I had a mental collapse and decided to get bloodwork. Was diagnosed with celiac disease and undifferentiated connective tissue disease (first opinion) I got a second opinion from a rheumatologist who said I have an autoimmune condition but I definitely don’t have a rheumatic one. He referred me to a GI for my celiacs and positive SMA. He also diagnosed me with POTS. But POTS is more of a symptom right ? My symptoms have gotten so much worse ( it’s been 3 months since I stopped eating gluten for the celiacs) . A lot worse during menstruation . Also have developed muscle twitches. Does anyone have anecdotal info as to what their POTS is accompanied by? Does anyone suffer from long covid related POTS? Quote Link to comment Share on other sites More sharing options...
Jbj Posted May 24 Report Share Posted May 24 I’m not sure where mine came from. My family thinks Covid but I was also a cancer patient and my chemo dose was too high so I had chemo toxicity and almost lost my life. Pots/ Disautonomia has been way worse than the cancer experience. I’m miserable everyday. The anxiety is awful and I’m on Atavan! Have tried others. Quote Link to comment Share on other sites More sharing options...
Pistol Posted May 25 Report Share Posted May 25 18 hours ago, Wayward_Phoenix said: But POTS is more of a symptom right ? Hello @Wayward_Phoenix - POTS is a disorder with a GROUP of symptoms, hence it is called syndrome. It is an autonomic dysfunction and often is caused by or accompanied by auto-immune issues. Not everyone with autoimmune illness has POTS and not everyone with POTS has autoimmune problems. Here is some info from our website https://www.dinet.org/info/longcovid/ Quote Link to comment Share on other sites More sharing options...
Wayward_Phoenix Posted May 25 Author Report Share Posted May 25 @JbjThanks for sharing . My symptoms seem to have been slowly creeping up on me for years now they’ve reached some type of peak, it could be from Covid . And i have horrid anxiety as well, I’m not taking meds cause im trying to menage with cbd. Im sorry you’re miserable every day , it’s rough not being able to feel at peace ! I feel you. In fact the only real relief I’ve gotten in years has been from recreational use of psychedelics….im gonna do more research on this as to why Quote Link to comment Share on other sites More sharing options...
Wayward_Phoenix Posted May 25 Author Report Share Posted May 25 @Pistol thanks for sharing , very informative clears some things up Quote Link to comment Share on other sites More sharing options...
Sarah Tee Posted May 25 Report Share Posted May 25 @Wayward_Phoenix, I’m sorry you are feeling worse even though you might expect to be feeling a bit better with cutting out gluten. Are you doing anything at the moment to help your POTS symptoms? Perhaps you are waiting to see an autonomic specialist? Quote Link to comment Share on other sites More sharing options...
Wayward_Phoenix Posted May 26 Author Report Share Posted May 26 @Sarah Tee Newly diagnosed with POTS although I realize I’ve been having subtle symptoms for years . I’m curious why all of the sudden it got so much worse . I was told to drink more water and add more salt to my diet Sodium and salt tends to elevate my heart rate and promote panic and anxiety so feel conflicted with that advice … I was referred to a cardiologist but don’t neurologists deal with ANS dysfunction as well? Do you know ? Quote Link to comment Share on other sites More sharing options...
MomtoGiuliana Posted May 26 Report Share Posted May 26 3 hours ago, Wayward_Phoenix said: Newly diagnosed with POTS although I realize I’ve been having subtle symptoms for years . I’m curious why all of the sudden it got so much worse . I was told to drink more water and add more salt to my diet Sodium and salt tends to elevate my heart rate and promote panic and anxiety so feel conflicted with that advice … I was referred to a cardiologist but don’t neurologists deal with ANS dysfunction as well? Do you know ? POTS typically waxes and wanes. Unfortunately for many of us the reasons are rarely clear. There can be clear triggers including infection, pregnancy, etc. Yes more salt and fluids is typical treatment for POTS. The salt helps expand blood volume. Yes specialists in dysautonomia are typically cardiologists (EPs frequently) or neurologists. We maintain a list of specialists here: Physicians - Dysautonomia Information Network (DINET) Quote Link to comment Share on other sites More sharing options...
Sarah Tee Posted May 26 Report Share Posted May 26 @Wayward_Phoenix, it’s often impossible to say why symptoms get worse (or better). Sorry, I was just commenting in a sympathetic way, not implying any significance. Just that sometimes you whack one mole and another one pops up 🙂 Quote Link to comment Share on other sites More sharing options...
Jbj Posted May 27 Report Share Posted May 27 I am getting an appointment with a neurologist!! I’m off of the beta blocker but in some ways I am worse. This is awful! It’s going to take some time to get in. Quote Link to comment Share on other sites More sharing options...
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