u/Anxious-Fox07

I went to the rheumatologist today for an unrelated reason (positive ANA counts in my bloodwork), and I found out that I'm partially hypermobile. I'm able to hyperextend my elbows, some of my fingers are double-jointed, and my arms/shoulders are quite flexible (I can do the reverse prayer easily). I don't meet the Beighton criteria for hypermobility for my fingers, hips, or knees though. However, after doing some research, I realized that I do very likely have neck hypermobility. I have mild double scoliosis, cervical kyposis, and have had chronic neck pain, tension, and headaches for YEARS. Even after seeing some physical therapists, I was never informed about possible hypermobility even though (according to me) I'm able to hyperextend my neck even with my horrific muscle tension.

For years and years I've had chronic muscle tension in my neck which has resulted in headaches, nausea, facial pressure, and a slew of other things, and only now am I realizing that it could've been hypermobility all along.

I don't know if I have hEDS or HSD at all, but I'm a little suspicious now.

I'm getting an endoscopy this Thursday as I've been having a lot of health problems, namely cardiac and gastrointestinal, following a Covid infection this past November. I'm almost certain I have GERD, gastritis, Roemheld's Syndrome and dysautonomia or vagal hypersensitivity which causes frequent, daily flare-ups of tachycardia, chest tightness/discomfort, belching, dry heaving, squeezing pains in my esophageal region and abdomen, vertigo, lightheadedness, shortness of breath, among other symptoms. I was cleared by a cardiologist a couple months ago after having a holter, several EKGs, and an echo, but I'm still terrified of going under anesthesia. What makes it worse is that anxiety hits me in the stomach and then contributes to triggering flare-ups. I also have exercise intolerance for whatever reason, and I'm still confused by my cardiac symptoms if I'm allegedly healthy and have a strong heart. :(

All of this to say that I'm terrified of going under anesthesia, especially with how Covid messed up my body. I've been under before when I had my wisdom teeth removed about 5 years ago and I had an easy, pleasant experience. But now being borderline disabled by whatever it is that's happening in my body, I'm so scared that my heart is going to be affected by the anesthesia, or that there's some complication during or after the procedure. I even hate writing this out because I'm scared I'm "manifesting" it.

I know there's no other way to figure out what's causing my chronic discomfort since most signs point to it being a gastrointestinal problem (whether a hernia, inflammation, or whatever) that's messing with my vagus nerve, but I'm so scared. :-(

I feel like I should be grateful for the very few days that I'm relatively symptomless-ish (I certainly am), but it always makes me question the validity of my struggles. It's like "oh, I'm kinda okay right now! Is my condition really that bad or am I just exaggerating?" I recently had a couple days of my body somewhat behaving, which made me think more about my want for accommodations at university. Now, to no one's suprise, I've been having frequent flare ups since yesterday. Cut to me struggling to move around because my body is doing God knows what.

It's not that I forget how frustrating and uncomfortable it can be, but that I'm constantly questioning if it's really "that bad". I have to remind myself that even if I'm feeling okay, I'm still not able to do the range of things I wish I could do, and comparatively, most people my age can do. Even when I'm not having a flare-up, there are still things I'm unable to do because of how my body can and will react. It's difficult because I almost feel normal (not really), and then I'm brought back to reality knowing there's something fundamentally wrong with me, even if no one's been able to tell me what that is yet.

Also, on a totally unrelated note, my PCP dismissed my concerns and symptoms as anxiety-related and told me "I'm too young and healthy" and to "see someone more frequently for the anxiety". Thank you, that really makes me feel better. :) Next time I have a flare up and can't move around comfortably I'll tell myself that.

Hopefully my specialists can actually be helpful. 🙃

I'm starting another semester soon, and I was wondering how I could get accommodations in university without a diagnosis? I don't fit the formal criteria for disability, but I have some conditions that, when I'm symptomatic (multiple times a day), can be disabling. I'm still not certain as to what I have, but I suspect Roemheld's Syndrome, which causes me frequent daily flare-ups of chest discomfort, tightness, tachycardia, vertigo, adrenaline dumps, etc., and I think I might have some form of dysautonomia also, maybe. I have formal diagnoses for mental health (anxiety, severe depression, and OCD), but I don't think those would provide me the accommodations I need for my physical problems. Because I don't have a diagnosis yet as I'm cycling through a number of specialists trying to figure out what's wrong with me, I have nothing to show, and I doubt even with a diagnosis I would qualify as disabled. For that reason, I don't know if contacting the disability department would do anything or if I should instead opt to contacting my professors directly, some of which I've known for some time and I have an amicable relationship with.

I would really appreciate any guidance as this is all new to me and I don't want to go through another hellish semester while being chronically unwell. :")

Edit: I'm located in Florida, sorry I forgot to mention that.

I'm losing my dog tomorrow, my sweet, silly childhood dog of 16 years. He's been with me and my family since I was 8, and I'm 24 now. I'm so sad and devastated and terrified. :( I know it's the right decision because he was diagnosed with advanced kidney disease, dementia, and is suspected of having cancer, but I can't help but feel guilty. And I don't know how I'm going to react, and I'm horrified of how my body is going to process it. For context, I had Covid back in November, which triggered a slew of health problems and being chronically unwell, one of which being Roemheld's Syndrome (gastrocardiac syndrome). I already had been dealing with bad anxiety for years and years, but it hits my stomach mostly, which then triggers flare-ups of Roemheld's. Just thinking about tomorrow has triggered several flare-ups, and I'm so scared for when everything actually happens, and how severely I'm going to process the grief. I want to be there for him when he passes, but I don't want to be having a severe panic attack or experiencing a severe flare-up and stressing him out or my family. I don't know if this makes any sense and I'm sorry. I'm just so sad, and I feel so much dread as the hours tick by, and I wish this didn't have to happen altogether. I don't want him to go. This year has been horrible with the health problems alone, and now losing him feels like too much. I feel sick and anxious and the saddest I've ever felt. I love my dog more than anything and it feels like my world is falling apart. :(

Hi all, I'm 24 and for context I caught Covid (the razorblade variant) back in November from someone at college (damn you), which triggered a slew of health problems thereafter. In December-January, I experienced inability to stand for prolonged periods of time, adrenaline dumps, crushing feeling in my chest as I tried to sleep, elevated HR upon standing (but not always), shortness of breath, chest tightness/squeezing, PVCS/PACS, GI problems, flashing vision, among other things.

Eventually, my symptoms started to level out and for the past 5-6 months, I've developed bad GI problems (GERD? Gastritis?) what I believe is Roemheld's Syndrome, and an unexplainable third group of symptoms. I've noticed that though I have my Roemheld/GI symptoms/"flare ups" while sitting (high HR, chest tightness, belching, acid reflux, adrenaline dumps, vertigo, etc.), these symptoms worsen upon standing and moving around. I've seen a cardiologist and have had several EKGs, a holter, and echocardiogram, which all came back clear with exception to a mild thickeningof my mitral valve (terrifying to me, but not a concern to my doctor). I know I don't fit a diagnosis for POTS because my symptoms aren't consistent with POTS criteria. Some days I'll be fine enough to walk around a mall, whereas others (most days), standing and moving around can cause an elevated HR by 20-40 beats (that eventually will drop to normal, hence no POTS diagnosis), chest tightness, squeezing discomfort, and shortness of breath. Even this is inconsistent throughout the day and the severity of my symptoms can vary. But when I'm having a bad episode it can be debilitating, and I have to sit or move at a snail's pace to do anything.

Because of this, I'm absolutely terrified to exercise because, generally, minimal exertion can cause chest/cardiac discomfort. I have diagnosed anxiety, depression, and OCD, so you can only imagine how this is bearing on my mental health (not well).

My semester this Spring was absolutely hellish because I couldn't navigate campus comfortably. Getting out of my car and walking would cause my heart to pound, adrenaline dumps, excessive sweating and shortness of breath. God forbid I dared to stand up or climb one flight of stairs to get to class and I felt a squeezing pain in my chest. I had several instances of the floor feeling unsteady underneath my feet.

On top of this, for years I've had chronic neck/shoulder tension that causes nausea, headaches, dizziness, and a slew of other things that make no sense to me.

I have no diagnoses and everything is speculation, but I'm wondering if I should see a neurologist in addition to my cardiologist, gastroenterologist, and a rheumatologist I'm seeing soon. I am so utterly exhausted and grieving my past, healthier body. I don't know what's wrong with me and the lack of answers and my residence in diagnosis limbo is destroying me mentally. :(

Hi all, for context, I've developed a slew of physical health problems after getting Covid (the razorblade variant) in November of last year. I'm feeling like a medical anomaly because I'm in the process visiting several specialists (cardiologost, gastroenterologist, nutritionist, rheumatologist) to see what's wrong with me. :/ I suspect my gut was absolutely wrecked by Covid (I had already preexisting GI issues), which has developed into chronic GERD or gastritis, and what I believe is Roemheld Syndrome. Granted, I'm not diagnosed yet but I'm frantically trying to find solutions. My most debilitating symptom is unexplainable chest discomfort/tightness/squeezing, shortness of breath, and elevated HR that worsens when I stand up or move around. I know I don't have POTS because my symptoms don't fit the criteria for POTS and I have days that I'm able to move around normally, and it seems like it's tied to my chronic GI problems. I was ruled out of any cardiovascular problems by a cardiologist by a holter and echocardiogram and several EKGs (when I thought my symptoms were a heart attack).

I have "flare ups" that happen daily and frequently that consist of elevated HR, palpitations, vertigo, adrenaline dumps, GI discomfort, belching, dry heaving, acid reflux, and more, and this happens regardless if I'm sitting or standing. The one thing that doesn't make sense to me is why it's worse when I stand or move if I don't have POTS.

I'm almost certain I have Roemheld's, which is already an underdiagnosed comdition, but it feels even more isolating since my increased cardiac discomfort upon standing and moving around is inconsistent with everything else.

I dealt with a semester during Spring of this year and it was absolute hell. I couldn't get up from my seat without feeling a squeezing pain in my chest, feeling like I was out of breath just walking across campus and up one flight of stairs, my heart rate spiking for minimal effort, and much more. I keep hearing that exercise is key for Romeheld's and I've been terrified for all this time to even attempt exercise because of my condition. (I experienced so many unexplainable symptoms between December-now that I don't feel like getting into).

I think what's frustrating is that my symptoms are so inconsistent that I feel like I'm being gaslit by my own body. Some days I'm okay enough to walk around the mall, but other days just standing up will spike my HR and make me air hungry and I have to be moving at a snail's pace just to make my bed. I know for certain there's something going on with my GI, but it shouldn't impede my ability to move around comfortably. Idk.

This has been my life for the past 8 months, and I don't know if it would be fair to call myself disabled at all. Especially since I'm able to kinda function normally some days, but I look back at pre-November me with anger and sadness. I look at other people on campus with envy. I'm only 24 (23 when everything began). I already have diagnosed anxiety, depression and OCD, but now I'm in medical diagnosis limbo trying to figure out what's wrong with me. I'm so exhausted, so tired - I've spent so many days crying and feeling hopeless. I wish I could exercise, I wish I could go hiking and explore the world, I wish I could be healthy again. I'm not able to just have a fun day out anymore - I have to pray that my body doesn't punish me and I'm able to somewhat move around comfortably. I'll feel everything sitting too, but standing/moving can make it more uncomfortable.

My entire life has been uprooted and now I'm looking at the upcoming Fall semester with dread and terror, especially since I originally caught Covid from someone at college (damn you). I'm dreading how I'm going to navigate the semester and terrified of getting sick again, even if it's just a cold.

I'm sorry that this was long and if it made no sense, because it hardly makes sense to me either. :(

Hi all, for context, I've developed a slew of physical health problems after getting Covid (the razorblade variant) in November of last year. I'm feeling like a medical anomaly because I'm in the process visiting several specialists (cardiologost, gastroenterologist, nutritionist, rheumatologist) to see what's wrong with me. :/ I suspect my gut was absolutely wrecked by Covid (I had already preexisting GI issues), which has developed into chronic GERD or gastritis, and what I believe is Roemheld Syndrome. Granted, I'm not diagnosed yet but I'm frantically trying to find solutions. My most debilitating symptom is unexplainable chest discomfort/tightness/squeezing, shortness of breath, and elevated HR that worsens when I stand up or move around. I know I don't have POTS because my symptoms don't fit the criteria for POTS and I have days that I'm able to move around normally, and it seems like it's tied to my chronic GI problems. I was ruled out of any cardiovascular problems by a cardiologist by a holter and echocardiogram and several EKGs (when I thought my symptoms were a heart attack).

I have "flare ups" that happen daily and frequently that consist of elevated HR, palpitations, vertigo, adrenaline dumps, GI discomfort, belching, dry heaving, acid reflux, and more, and this happens regardless if I'm sitting or standing. The one thing that doesn't make sense to me is why it's worse when I stand or move if I don't have POTS.

I'm almost certain I have Roemheld's, which is already an underdiagnosed comdition, but it feels even more isolating since my increased cardiac discomfort upon standing and moving around is inconsistent with everything else.

I dealt with a semester during Spring of this year and it was absolute hell. I couldn't get up from my seat without feeling a squeezing pain in my chest, feeling like I was out of breath just walking across campus and up one flight of stairs, my heart rate spiking for minimal effort, and much more. I keep hearing that exercise is key for Romeheld's and I've been terrified for all this time to even attempt exercise because of my condition. (I experienced so many unexplainable symptoms between December-now that I don't feel like getting into).

I think what's frustrating is that my symptoms are so inconsistent that I feel like I'm being gaslit by my own body. Some days I'm okay enough to walk around the mall, but other days just standing up will spike my HR and make me air hungry and I have to be moving at a snail's pace just to make my bed. I know for certain there's something going on with my GI, but it shouldn't impede my ability to move around comfortably. Idk.

This has been my life for the past 8 months, and I don't know if it would be fair to call myself disabled at all. Especially since I'm able to kinda function normally some days, but I look back at pre-November me with anger and sadness. I look at other people on campus with envy. I'm only 24 (23 when everything began). I already have diagnosed anxiety, depression and OCD, but now I'm in medical diagnosis limbo trying to figure out what's wrong with me. I'm so exhausted, so tired - I've spent so many days crying and feeling hopeless. I wish I could exercise, I wish I could go hiking and explore the world, I wish I could be healthy again. I'm not able to just have a fun day out anymore - I have to pray that my body doesn't punish me and I'm able to somewhat move around comfortably. I'll feel everything sitting too, but standing/moving can make it more uncomfortable.

My entire life has been uprooted and now I'm looking at the upcoming Fall semester with dread and terror, especially since I originally caught Covid from someone at college (damn you). I'm dreading how I'm going to navigate the semester and terrified of getting sick again, even if it's just a cold.

I'm sorry that this was long and if it made no sense, because it hardly makes sense to me either. :(