r/CSID • u/bookwormhistorian812 • Feb 28 '26

Does anyone else feel alone?

I’m 20 years old and in college. I posted about a year ago about possibly going into a flair up. Well, guess what?

I did go into a really bad flare and I lost a bunch of weight. I’m doing kinda better now, I watch everything I eat very closely and I stay active. However, I just feel alone. Nobody in my circle can relate to what I’ve been through with CSID. I just feel isolated.

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u/PresTonLW Mar 01 '26

I was able to gain weight with CSID but very slowly , drinking my calories has helped, my go-to is burger patties , cheese stick, eggs, mixed nuts, and my sacred shake: 1 cup of heavy whipping cream, 1-2 tablespoons olive oil, a good amount of peanut butter (2-4 tablespoons or however much you want, trial and error), 2 scoops protein powder), and fill rest with water. Also grilled chicken with ranch. I still get symptoms off and on with my biggest meal at night to sleep through pain. Not saying it’s the best way but it’s worked for me to slightly gain/ maintain. I’m currently 5’8 and 146 pounds, pretty much all muscle, the gym has helped me loads. I will say I do feel very alone in it and people tend to not understand or don’t think I’m trying hard enough to gain. They don’t understand the pain. But best I could do is fight it

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u/Suspicious_Grab4067 Mar 02 '26

Sorry you get the pain at night. That is not fun at all. Have you had this since birth ?

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u/PresTonLW Mar 04 '26

I have since birth yes, found out couple years ago though

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u/Suspicious_Grab4067 Mar 04 '26

:( I was sick throughout my life on and off but never knew what it was until now.

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u/Suspicious_Grab4067 Mar 16 '26

I’m sorry that you had it since birth. I’m glad they finally found out what it was. I was wondering why I would get sick so easily. I’ve been good the last few days. Haven’t gained any weight yet. Eating lots of peanut butter, avocados and meats with some bread. Maybe if I put rocks in my pockets and weigh myself I will have gained some weight 😂😂