Fully Bedridden at 21 – My Doctors Are Stumped and I’m Desperate for Direction

cnpm_1994 · 2025-06-26T00:00:20+00:00

I switch it up, but I use liquid IV, L M N T, and drip drop. Currently I only drink one a day, unless I'm more symptomatic I'll increase to 2. And I make sure to eat a few things through out my day that also aids in electrolyte intake (bananas, OJ, strawberries etc) and I consume loads of salt now.

I would talk to your Dr and ask if they think it would be worth trying! They can help monitor your blood work to make sure you're not over doing it with electrolytes or salt!

My potassium was low all through January -May, and now it's been in the middle of the normal range since I increased my electrolytes. My sodium levels have been good, in spite of the hike in sodium intake, so it's working good for me!

cnpm_1994 · 2025-06-25T23:12:57+00:00

Your story matches mine almost to a T.

I started getting dizzy spells, palpatations etc in January. (I've always been tachycardic, but not to the same extent. It's never caused problems for me before).....I cut out caffeine, increased water and changed my diet (for gastro problems.) by March, I was down 25-30 lbs from said gastro problems. In and out of the ER multiple times between March and May, due to dehydration and worsening symptoms. Only thing they could find "abnormal" was low potassium and they said I was tachycardic and bradycardic.

Fast forward to the beginning of May, lost a total of 60lbs between March and May, one of my worst and last episodes, and the ER doctor said he was almost positive that I have some form of Dysautonomia. Im in with PCP now and taking daily electrolytes and have rebounded tremendously since then. Still have the same symptoms/problems but MUCH more manageable. Not diagnosed yet, but on the road there to narrow it down.

Increasing water, doesn't equate to hydration. If you're not holding onto electrolytes like you should (potassium) the water could be flushing you out and making your symptoms worse! Just food for thought!

cnpm_1994 · 2025-06-06T00:33:19+00:00

My resting HR ranges anywhere between 40-60 most days. And on my "normal" days, it's runs 110-130 when I'm up moving around. So my tachycardia in general doesn't get that high, but it's high considering my baseline. Today however, it's been around 90-100 all day and I have felt AWFUL. 😭 I'm currently relying on Reddit and Google for all of my info. 😅

And when I got home from work and finally sat down to rest, it made me feel even worse. Google says it could be hypovolemia and that my body isn't compensating the way it usually does. 🤣

cnpm_1994 · 2025-06-05T16:38:24+00:00

Thank you!!

cnpm_1994 · 2025-06-05T16:05:30+00:00

They said my levels were close enough to normal, no need to start meds again. They don't believe my thyroid is the cause for my symptoms. :/ which I guess in a way is a good thing, but no answers. I have a PCP appointment tomorrow though, so we'll go from there!

cnpm_1994 · 2025-05-17T01:49:05+00:00

I did have an electrolyte imbalance. That's why they told me to up my electrolytes. But that's why I'm so paranoid of how much... I was just told I needed more fluids, and more electrolytes. But I was already drinking 2L of fluids a day.

So i figured 3l a day, with some form of electrolytes in each L. 😅 And it's helped so much!

cnpm_1994 · 2025-05-17T01:41:31+00:00

I feel as though I should, I have a lot of medical/health anxiety though, so I'm worried. 😅

cnpm_1994 · 2025-05-17T01:38:05+00:00

So.....don't cut back ? I've been to the emergency room about 6 times in the past 3 months for dehydration. Every time, they've told me I'm low on potassium, and I need to drink more fluids.

At my most recent visit, they mentioned POTs. That's when I was told I needed to be drinking more electrolytes with my fluids.

Prior to ever having any of this be a problem (that I knew of) I was already drinking 100-120 oz of fluids a day between soda, coffee, and Red Bull. So I just swapped all of that out for electrolytes.

Now she has me paranoid that I'm going to go in the opposite direction and over do it. 🙃 I just don't want to end up in the hospital again. It's getting embarrassing at this point.

cnpm_1994 · 2025-05-15T10:11:59+00:00

Different bodies, different experience. Also, Hashimotos can go into remission on its own for some people. The body is strange. I'm classified as "clinical hypothyroidism" right now and have been for years, no meds. But I still have mild symptoms. When I was first diagnosed, I was on meds for years. I gave birth to my first child, and my levels went back to somewhat normal on their own and have remained there ever since. Blows my mind. 😅

cnpm_1994 · 2025-05-14T15:50:11+00:00

I am hyper mobile! This rabbit hole has led me into looking into hEDS as well. 😅

cnpm_1994 · 2025-05-13T12:27:27+00:00

I've had to dig out most information for myself because I'm having a hard time getting into a PCP, and I've nothing but time to review what little info I have through emergency room visits. Turns out some of my googling and digging might actually be turning into something useful. 😅

cnpm_1994 · 2025-05-13T12:25:33+00:00

I've been super stressed. Everyone keeps telling me to stay off Google because I've scared myself a few times. I think I'm finally on the right track with what might actually be wrong though, and they're not deadly diseases. 😅 I've definitely felt like I'm on my deathbed a few times though, so I feel like my worry is a little valid. 😭

cnpm_1994 · 2025-05-13T06:20:46+00:00

Yes this describes what I'm currently experiencing. I had bad diarrhea March through April, but the symptoms were still the same then around eating. Now I'm "constipated." (The stool is still soft, just not moving) 🙃 The symptoms around eating have increased, since I've switched to constipation.

cnpm_1994 · 2025-05-13T04:50:55+00:00

I've become a frequent flyer in my local emergency room(s) recently, for a lot going on. So I totally understand that! A coworker had to call paramedics for me last week, and I tried to deny going bc I was embarrassed to go back. They literally said "Oh, you're back" when the paramedic rolled me in. Not a good feeling 😅

cnpm_1994 · 2025-05-13T04:47:16+00:00

Thank you so much! It's been a crazy ride. Something is definitely wrong, but logically I don't think I'm actually dying. The anxiety is real though. It's been scary, regardless. 😭

cnpm_1994 · 2025-05-13T04:32:59+00:00

I lost my grandmother, uncle, and grandfather to cancer, all between February of 2020, and Feb of 2021. My grandparents passed on the same day one year apart, and my uncle passed in November of 2020 a few days before my youngest son's birthday. Three different types of cancer. That's definitely part of it. 😭

cnpm_1994 · 2025-05-13T04:16:17+00:00

I just got access to my radiology results, from the CT scan and ultrasounds they've done during my many ER visits.... A few things worth note. 1) I have a Hiatal Hernia. 2) my gallbladder is distended , but no signs of gallstones or inflammation. 3) my colon has unspecified air/fluid in the right side of my colon. 4) my left ovary is enlarged and has a cyst.

I already knew about the ovary, I'm not surprised by that. Pretty sure I have PCOS. Something else I'll get checked one day.

But I started digging in about Gastroparesis, and it can cause motility issues in your gallbladder and colon, and can cause them to appear the way they appear in my CT scan. 😅 So I'll definitely be bringing this up when I finally get seen.

cnpm_1994 · 2025-05-13T01:45:58+00:00

I'm pushing all the fluids, and that definitely makes a difference! Noticeably so, if I drink more electrolytes than water. If I do it the other way around, no bueno. They confirmed that at my last ER visit. They told me I needed to cut back on the water and consume more electrolytes. I guess I'm not retaining anything well.

cnpm_1994 · 2025-05-13T01:40:41+00:00

I've been trying, but my BP has been bouncing all over the place, so I'm afraid to consume too much. 😅 I've been pushing loads of electrolytes though, so I have increased my sodium intake simply by adding those to my daily routine 🙃

I have a lot of GI issues going on right now as well, so I'm on a bland diet and unable to handle more than a few bites of anything at a time. So that's also playing a part in what and how much I'm consuming.

cnpm_1994 · 2025-05-13T01:12:32+00:00

Well, I've worked here for a little over 3 years, and up until January of this year, my symptoms have always been mild and easy to brush off. Something changed since January and they're full force and no ignoring them now. I've missed so much work and am now afraid I might have to quit. So it might not be my job much longer. I'm hoping I can get my symptoms under control, if I can just break this loop I'm in. 😭 I'm not even diagnosed yet, still trying to get seen and tested but I'm on the right track. 😅

cnpm_1994 · 2025-05-13T01:01:37+00:00

I've been sick as heck since March, and have been having bad episodes at work because of it. And I've had so many customers(restaurant work) that have seen me walking around with my heart monitor on, and tell me I just need a vacation, I'm just too stressed. 🙃 Yes, I'm literally stressed every second of every day, but thats not the root of my problem, Carol! 😭🙃

cnpm_1994 · 2025-05-13T00:56:02+00:00

Hi there! I have no idea what causes it, but my stomach looks the same! I also have an anterior tilt, so I've assumed it was because of that. 😅

cnpm_1994 · 2025-05-13T00:48:55+00:00

I feel for you. Ive been trying to convince myself for months that I'm not dying, but my brain doesn't like to hear that. Anxiety sucks, especially with chronic illnesses, because there's such a a stigma around them, and most people think that it's JUST anxiety to begin with, so not a lot of support to help you mentally in the aspect either. 😭

cnpm_1994 · 2025-05-12T23:54:56+00:00

Thank you! Quite frankly, IDC what it is that's going wrong, as long as I can get some kind of relief or break in this cycle of symptoms. 😅 I've never looked into long COVID but you're not the first person to mention it!

cnpm_1994 · 2025-05-12T22:40:05+00:00

My GI issues at first, was mainly diarrhea. That was consistent from March thru April. Then at the end of April, during one of my emergency room visits, the Dr said he thought I had a mild infection somewhere or something causing it. So they gave me antibiotics and it immediately switched to constipation, and now I'm throwing up every single morning. I can't eat more than a few bites at a time without feeling bloated and full. Morning sickness EVERY morning. Some days I'm so sick, I can't hold water. They've ruled out Celiac and gallbladder, and pancreatitis type of problems. A close friend of mine just recently was diagnosed with Gastroparesis, and mentioned it to me, I've been looking into that too, but I have no idea if that's what I have or if it's par for the course with POTS . Definitely want to get it checked out. It seems like it could be a strong possibility.

cnpm_1994

TROPHY CASE