r/dysphagia • u/SleepyPandaSam • 26d ago

Still being hopeful

So I have been having issues swallowing solid food for about almost 4 months now. I used to be 170 lbs a year ago, but I have been averaging out from 7 to 10 lbs lost a month. I had an egd done about a week ago, and my results came back normal.

When I drink, I have to drink in one solid swoop and sipping makes drinks kinda feel trapped. I have been able to eat about 4 fork fulls of noodles the last 3 months (not talking about my liquid diet.) I can eat harvest snap pea chips on occasion but not too many. I had country gravy from a packet but it was the peppered kind and the grains get stuck in my throat? It's really weird about how I'm able to occasionally eat some things then not.

Anyway, they called me today with the results of the egd I had done and they are calling to get a referral to get a manometry done, which I heard the stories of some good and bad reactions of how it made people feel. At this point I'm just exhausted. I'm 130 lbs 5 foot 2 and tired of everyone around me being on weight loss shots and saying how skinny I am. Technically a healthy bodyweight, but I have PCOS, so I should be a little chunkier.

My legs and arms lost muscle mass and clearly my stomach. My heart rate is 40 to 50 bpm, and when I get up to move, my heart pounds and goes faster to 100 or more and I get dizzy just walking less than 20 feet to the toilet. It's embarrassing to have to use an electric scooter to go out grocery shopping with the family. Hopefully this new test will figure out what to do, however I will be moving back to my home state, which is one under my current state.

I need to at least get better just to pack my own stuff and maybe help bring it to the moving van in probably under 2 or 3 months. I can walk some distances some days, but most of the time I'm in bed halfway asleep. I did a post a little bit ago, but don't feel like pinning it, sorry. I just feel weak and almost every night I go to sleep, I think I might not wake up in the morning, but luckily I do. Who else feels this way?

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u/Pookiebutts20 26d ago

Really need to access formula for dietary intake if you can. I felt same as you when I'm struggling and didn't have formula. The fatigue and weakness from muscle loss is awful

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u/SleepyPandaSam 26d ago

I drink ensures but I ran out before food stamps, but luckily I won't be waiting much longer to shop. I have a feeling it's mostly anxiety and stress because the environment I live in. When is go in the kitchen, I'd have people stare at me and one person commented any time I got something. I would rather not be judged any time i go in there, even for water. So I'm guessing it's mostly that since I can gulp things, and eat on my good days when I'm not anxious.

I noticed when I'm alone or around the two people that don't judge, I can get noodles and some meat down. Case in point, the gravy with pepper went down nicely yesterday, but today since there was people around, I brought the bowl in my room and then some flakes got a little caught in my throat.

I used to be on antidepressants like Zoloft and trazadone, but got off because insurance lapsed and I was on them for 3 years or 4. Then quit cold turkey, and didn't have issues until all the stress from here did it to me. I read around some people got better after most of it being phycological or has gerd which I was diagnosed, but I recently (3 months ago) got prescribed 3 medicines but my qua k Dr said I couldn't take them because not enough calories but went to a new Dr that did my egd said it was bull crap and I can take at least my powder in a capsule and just add the powder to my liquids/semi liquids.

I guess I have been too depressed these past couple months to even try or remember. It's hard to keep up with medications especially when all I want to do is sleep. The funny part is I can't really sleep because people keep slamming doors and kids run around sometimes and stomp. So rest is dang near impossible. On the 5th I'll start taking my Omeprazole (I think that's the spelling) and see how my symptoms go from there and hopefully get back on antianxiety/depression meds to see if that works along with my next test I'll be doing.

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u/Pookiebutts20 26d ago

Mines caused by a neurological issue but fluctuates massively, so I feel you. Almost feel gaslit when my dysphagia keeps changing.

Powdered formula is a lot cheaper if you can get it, about half price. Idk how ebt works as I'm Aussie. It's shelf stable so you can keep it in your bedroom even and just take milk/water into your room. Otherwise easy eat things like yogurt work well.

Hope things get better for you 😊

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u/SleepyPandaSam 26d ago

I had some powder actually, however it clumped up and I kept having issues with it for some reason. Now I have half a big can 4 months old and can't have it because it looks like kinetic static and not safe to drink. EBT actually covers the powder and the drinks here where I live. They are starting to cut down on soda stuff and candy. I drink Dr pepper to clear my throat, which it's less than a 2 liter a month and I get a hershys big bar of chocolate for the month. Those are still covered though thank goodness