Neomorph

@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!

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?

@Sarah Tee @MTRJ75 @MattyT @MikeO Thank you all for your input! I will keep doing what I'm doing, then. I have an appointment this week with a new PCP to see if she will help me with referrals and come up with more of a game plan. Fingers crossed she takes me a little more seriously!

Thank you! I didn't realize Sjogren's shows in a blood test. I'm trying to see a rheumatologist, but they denied my referral last time due to "lack of evidence" of me having a rheumatologic condition. My symptoms aren't enough. That is why I'm see the eye doctor now, to gather more "evidence". Sigh xD

I'm wondering if anyone here has dysautonomia as a result of an autoimmune condition, such as Lupus. If so, what was your journey like, and would you feel comfortable sharing some of your symptoms? I think my POTS may be due to an underlying autoimmune or genetic condition. I have a family history of Lupus in particular. Lately I have had horrible dry eyes and dry mouth and my doctor has referred me to an eye specialist to see if I maybe have Sjogren's (which as I understand it, may or may not be associated with Lupus). I have had dry eye off-and-on for a few years but now with the cold, dry weather it is bothering me constantly. I guess I'm wondering how exactly did you find out you have Lupus, or another autoimmune condition, and what tests they did. From what I've read, it can be hard to actually diagnose these and a diagnosis comes from ruling other things out - or getting an ANA blood test. Can someone have like "beginning" stages of Lupus and not test positive for it initially? My organ function/labs are all normal, so my doctor thinks I'm "fine". If you can point me to any medical literature that would be much appreciated too

Ugh I am sorry! We've finally left the heat behind here, sorry you've found it I was miserable this summer as well. I don't know what to do other than stay in the AC and avoid being in the sun when possible! Direct sunlight is unbearable. I hope you manage to stay somewhat cool.

I know how you feel! I was diagnosed with POTS in May, but I feel like there is more going on with me, too. I have symptoms that just don't seem like they can come from POTS alone, or managing my POTS symptoms doesn't manage these other ones. Unfortunately, my doctor has been very resistant to looking into more chronic conditions/causes with me. I believe I could have Hypermobile Ehlers Danlos - from what I have read, connective tissue disorders like hEDS and POTS often co-occur. I have common hEDS-like symptoms, like cracking/popping joints, easy bruising, joint/muscle stiffness, joint subluxations, and GI issues. It would seem to fit, but my doctor doesn't think so. It sounds like hEDS can be a cause of POTS. I'm not really sure of the mechanism or why it causes POTS. From what I understand - and someone correct me if I'm wrong - POTS is often a symptom of another underlying condition, or if you have POTS you likely have something else as well. So in short, no, I have not found the cause of my POTS, but hEDS or connective tissue disorders in general could be worth looking into, depending on your symptoms. I am very new to this POTS/dysautonomia/chronic illness thing. I hope you find some answers!

@Pistol I know, right? Thanks for your advice and support everyone. @MikeO @Sarah Tee @Sushi I'm finding that is tough to come by! I suppose I will see how things go with the gastroenterologist and see if I can't get more help from there.

@Pistol That all makes sense. I understand hEDS isn't really treatable, but it sounds like there are precautions I could take (if I do have it)? As @Sushi was explaining, it sounds like they have the help of a physical therapist. I'm guessing based on how picky my insurance has been, I would need an official diagnoses in order to receive this kind of help. I guess I'm worried about my "hEDS-like" symptoms progressing and causing more issues down the road, so I'm interested in preventative measures, even if that is things like exercise and supplements. The link between hEDS and anesthesia is interesting; I have woken up during surgery and have memory of it, and I wonder if that could be why. As for digestive issues, I will try keeping better track of what I eat and my symptoms. I am pretty horrible at keeping a food diary. I try to make "mental note" but that doesn't always work out. I think I would benefit from allergy/intolerance testing. @MikeO I will try that! Anything to make me more comfortable. @Sarah Tee Those are things I was considering as well. I feel like a diagnoses would be helpful for preventative care/general wellness at the very least. I have no idea if my GI specialist knows anything about dysautonomia. My PCP just kind of refers me to whomever he sees fit. I think he referred me to a GI office, I might be able to do some research and request a specific doctor when they schedule me. And yeah you would think he would discuss these things with me, especially because I was right about having POTS. I didn't get to tell him about all of my hEDS-like symptoms. He cut me off when I said "fatigue", ordered a sleep study, talked about depression, then shooed me out of his office 😂

Hi everyone, here I am making another post. Based on some info/symptoms I have shared in my other posts, some of you suggested that I get checked out for Hypermobile Ehlers Danlos (I have confirmed POTS). Does anyone else here have hEDS, another hypermobility condition, etc? I've been watching lectures that some of you have provided and I'm very suspicious that I may have it. However, my PCP is kind of... unhelpful... to put it nicely. I voiced my concerns to him and he basically wouldn't entertain the idea or refer me to see any specialists. He told me that an hEDS diagnoses "wouldn't help much anyway", so I shouldn't bother pursuing a diagnoses. But, I have also read that a proper and quick diagnoses is essential to improving quality of life. So I guess I'm wondering, do you all think pursuing an hEDS (or other hypermobility spectrum disorder) diagnoses is worth it? I'm hesitant to just self-diagnose. I also don't know where to go from here, because my PCP won't refer me for hEDS. Secondly, does anyone know about the link between hypermobility and gut issues? I have had chronic constipation, periods of painful bloating and gas, and diarrhea (sorry, TMI alert!) for over a year now. I feel like my guts work on either all or nothing - I practically have to force myself to have diarrhea to get things moving. My doctor recommended fiber supplements but that makes my symptoms SO much worse. The bloating is unbearable. Luckily, I bugged my doctor enough that he relented and referred me to a GI specialist. Currently waiting on them to get back to me. Does anyone have any advice or info in the meantime? My gut issues are one of the main reasons I'm suspecting hEDS, as I hear that is common. But I also have random joint and muscle pain, cracking/popping joints, easy bruising, and what I think are joint subluxations. I went out to lunch with a friend, and when I stood up from the booth I felt like I could no longer put full weight on my left leg. I could feel instability and discomfort in my left hip. It kind of just "went away" as I walked/limped around some more; could this be the joint going back into place? I just feel like I have many symptoms and twinges that I can't otherwise explain. Would love to know more about hEDS, diagnostic processes, gut health, etc. if anyone knows more! Thank you.

@Sarah Tee So, funny you should mention "my autonomic specialist". I had a doctor's appointment today, but just with my GP. I don't have an autonomic specialist. I tried to tell him my concerns, predominately my fatigue and digestive issues, and that I wonder if I could have hypermobility exacerbating/contributing to my issues. For fatigue, he recommends a sleep study (I guess that's a fair first step, but I figured I'm fatigued because I have POTS. He wants to check for sleep apnea). For my digestive issues, he basically recommended fluids and fiber, and if I still don't become regular, then he'll refer me to a GI specialist. I've been chronically constipated for a year now, doing fiber, supplements, fluids, everything. Still cannot reliably have a BM and I feel so sluggish. I think I need to see a GI specialist *now* xD Oh well, I suppose that's the US medical system for you. I also just did fasted labs today and everything looks normal. Of course. Thank you for your concern! Leaving that job was honestly the biggest improvement, still not quite 100% of course. I have joined a regional dysautonomia group! I will definitely ask around about specialists because I don't have any in my corner yet. Thanks for your comment, I hope you are doing okay!

Yeah, that definitely makes more sense in my mind! I will ask my doctor about getting on a more regular schedule, and with a new medication. Do you find that caffeinated beverages interact with your medicine? I think coffee and propranolol make me loopy, and I'm wondering if I should go decaf.

@Pistol I am also glad I recognized the job was ruining me! Unfortunately, my parents were not thrilled when I quit my job, and that continues to be a point of contention. I'm trying to take the necessary steps to get back into the workplace. I'm working part-time with a CEO of a start-up and also pursuing a Google Digital Marketing certification. A lot has been going on since my diagnosis! Ideally, I would like a work-from-home job, so that I can be near a bathroom, snacks, water, supplements/meds, etc, and not have to explain why I'm getting up for the 15th time 😂 That's the hope, anyway. As for meds, right now I am on Propranolol 10mg taken as needed before stressful events... I was actually initially prescribed it because I was having stress colitis during my senior year of college. This was before my POTS diagnosis. My doctor thought if we could calm my racing heart before things like presentations and tests, I wouldn't have to run to the bathroom with diarrhea. It's weird, now that I'm not in school, I rarely have diarrhea and I'm mostly constipated. My doctors said I could keep taking propranolol as needed for my tachycardia due to POTS. But I can't really predict when I will need it, and taking it at night disturbs my sleep, so I don't take it much at all. Unless I have a planned meeting, I take it to help me calm down. I wonder if I should be on something more consistently, to prevent spikes in my heart rate. Does Carvelidol give you any side effects?

@Jyoti It's very interesting, if unfortunate, how having one system out of wack can cause so many seemingly unrelated issues within the body. The deeper I dig, the more I have moments of "wait, that's not normal?". I'm definitely learning a lot about myself and chronic conditions. I am doing the basics like increasing salt and water intake. I have compression garments but unfortunately, I rarely use them as I have sensory issues with tight clothing. Honestly I think the biggest thing for me was quitting my veterinary assistant job. Working 10 hour shifts, not having time to take breaks, working in emergency situations, absolutely wrecked me. I couldn't fully recover over the weekend, and that's what made me look into getting a POTS diagnosis. I've been resting and doing light work for a couple of months now and I feel much better. I'm now trying to address all of my symptoms and slowly transition to finding a POTS appropriate job. I want to take my health more seriously. I think I will ask my doctor about another medication for the tachycardia, and maybe something to improve gut motility. That is probably my next biggest symptom. Thank you for your input, I'm feeling better prepared for my appointment more informed in general

@Jyoti I have not really explored those sources yet! Thank you, that gives me something else to look into. I made it through slide 153 of that presentation - and I will go through the rest - but now I'm highly suspicious I have more than only POTS. That is also good to know that maybe my Beighton score is not as accurate as it could be. May I ask, do you have any tips on how to lessen your hypermobility, or POTS, symptoms? I know of course I should consult my doctor before trying anything, but I always like to hear how people experiencing these conditions cope. Thanks again for the great resources.