u/HoTzParadize

As the title say. Anyone else like me ?

I'm very severe, bedbound 23h55 a day, only (struggling to) eat and use the phone 2h daily.

Every day is miserable with a ton of symptoms, no matter the pacing, the rest, etc.

Sometimes it's even worse like I can't move and can't eat, dysautonomia through the roof, etc, usually when trying a med that I don't tolerate. Then it's clear it's a crash. But otherwise day to day I never know if it's PEM or just my normal state.

And it's been like that for 18 months. Really wondering if it is common as it seems everywhere that people can clearly tell their baseline and their PEM.

TL;DR: Seeking help/advices as I can't gain weight and I'm very underweight.

M28, very severe and bedbound since 17 months, sick since 19 months. Can only use phone a bit, no tv, no shower etc since more than 14 months.

Before getting sick I was 63kgs for 1m75. I fell at 56 quickly, then at 51 in November 25. Since then, I'm stuck at 51kgs painfully (BMI 16,5). I eat the same meals mixed since 8 months, 4 small meals a day but can't get to more than 1200/1300 kcal on good days. I tried everything.

Too much fats triggers my gastroparesis like symptoms, too much carbs triggers dysautonomia symptoms, and too much quantity triggers everything. Nutrient dense drinks makes me feel like I'm dying. I also have bad reflux but not always, and feels like my stomach is "irritated". I'm eating baby portions. I have no solution.

MCAS meds (cetirizine, famotidine, Ketotifen, cromolyn) either did nothing, slowed my gut more or crashed me, Domperidone helps sometimes but not much, Prucalopride made me crash. Probiotics doesn't help with that also (I have a major dysbiosis as per a BiomeSight test).

Currently I eat eggs, oatmeal, sweet potatoes, nut butter, soy milk, whey, gluten free white bread, olive oil, white fish or ground beef, honey, carrots. All solid foods are mixed or pureed.

I already have to force myself to eat my 4 meals. I can't add anything. I'm at a loss and terrified because I worsen again and my stomach acts up. I have no help and all my doctors are just telling to eat more or go to the hospital. Any advice ? Anyone in the same situation ? Being so underweight for so long I think is causing a major worsening in all symptoms.

Sorry it's not well organized but I'm in a bad crash and can't organize m'y thoughts. Even typing this cause huge symptoms. Also sorry if I don't reply. Thanks for the help.

TL;DR : People that are very severe physically and cognitively, let me know I'm not alone, and if you can, let me know how you're holding on.

Long time haven't posted. I've (M, 28) been having my first symptom 18 months ago, and in 2 months, without pushing, became progressively very severe. 16 months of being bedbound (could go freely to the bathroom in the beginning, now only twice a day), unable to watch video content, listen to music, audiobooks etc (could do 20 minutes in the first months). Just 2h of scrolling in 5 minutes chunks, resting otherwise.

The first year I had hope I would improve like all the stories I could read online, but it isn't happening and it's even getting slowly progressively worse. I also had hope because I had medications to try, but now having tried 50 things including almost all MCAS and POTS meds, LDN, LDA, DXM and lot of other things, nothing helped and some things worsened me. I can't "enjoy the little things" as I can't distract, and since worsening in October, even food is awful as my stomach is a mess and I can only eat the same 4 small, mixed meals every days. I'm severely underweight (51kgs/1m75) because of this.

On top of this absolute hell of an existence, it feels so lonely reading posts here or on X, because I keep seing v.severe people that can still use their phone 10h or listen to audiobooks or watch TV. It feels like I'm all alone in this. And I know I'm not but it's really hard to cope.

So v.severe physically and cognitively folks, please let me know I'm not alone, and if you can, let me know how you're holding on. Because I can't anymore. And I don't want to anymore.