u/GGEsoteric

▲ 103 r/eds

Losing weight made me worse

I (20F), like many of you, have been asked “Well have you tried losing weight?” more times than I can count. I’m 5’4 and was around 155lbs at my heaviest now 112lbs. I have been lucky to be diagnosed hEDS since I was 13 (though it was one of those cases of having an autoimmune response that made doctors take everything more serious so not sure luck is the best word).

Over Fall 2024 to present I gained the Freshman 15 and dropped it pretty quickly as I developed hormonal gastritis (an issue for a different subreddit). Now bordering on being underweight I can confidently say having a bit of meat on your bones helps. I have experienced far more subluxations since losing the weight and am in pain much more regularly. Despite my efforts I cannot seem to gain any weight back and now have to use more mobility aids than I did before the weight loss.

My POTS symptoms have also become significantly worse as my heart rate is now 130bpm while walking and up to 180bpm on inclines. No more hiking for me! I’ve also had increased blackouts when going from relaxing to standing, fully fainting for the first time in my life.

Edit: Everyone telling me I lost weight improperly clearly missed the part where I said it was from GASTRITIS. And that DESPITE MY BEST EFFORTS I CAN’T GAIN IT BACK. I had no control over this and was horrifically sick through a majority of the weight loss which took place over the course of 2025. Despite this I was going on MULTI MILE WALKS to maintain exercise. I am not asking for advice. I’m warning others. I CANNOT DO ANYTHING ABOUT THIS.

TLDR: Being overweight probably isn’t great but being underweight is so much worse. Aim for the middle if your weight loss is intentional and to all my fellow GI issues folks, god speed.

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u/GGEsoteric — 3 days ago
▲ 47 r/eds

Do these pillows help with shoulder subluxations?

been subluxing a lot more in my sleep lately and my fluffy pillow + body pillow combo isn’t really cutting it. If you’ve tried this type of pillow please share your experience and how much you think it helped/a better alternative

Edit: Thank you for all the responses! Found relief from putting a big plushie behind my back and letting that take the weight off my shoulder. TLDR for the comments the pictured pillow doesn’t work. Pillow fortress all the way! (I also use two small knitted blankets on my pillow and mould them to keep my head at a good angle)

u/GGEsoteric — 12 days ago

Was wondering if anyone knew the actual background lyrics at the end of Stereo Boy? I can make out "don't leave" and "we didn't/couldn't get it back"(still iffy on that too) but not much else

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u/GGEsoteric — 16 days ago