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lunar__dude

Updated 10mo ago

Feeling Alone with SLE Symptoms

I wish I knew more people with SLE who experience neurological and gastrointestinal symptoms. I feel like the only one.

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TeaJay

2y

I was just diagnosed with SLE. I have issues with my stomach and brain for sure, but not sure if it's connected with the lupus or not
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TeaJay

2y

You are for sure not alone though
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lunar__dude

2y

thank you 💛 My rheumatologist told me they’re probably connected in my case. She said my POTS was probably caused by nerve damage from my lupus, as were my GI issues. We also suspect I may have crohns I’m just scared because I feel alone. I appreciate the kind words. If you ever wanna talk, I welcome DMs 💛
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Whitney118

2y

You're not alone!! I totally get it! I have major GI problems to the point they had to remove most of my intestines and part of my stomach. I have permanent staples.
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lunar__dude

2y

oh wow. I hope your symptoms are less now! My GI symptoms vary in intensity, and at their worse I lost about a third of my body weight in 6 months because I could barely eat. Right now I’m waiting for a gastroenterology referral, and my primary care and I suspect crohns
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Whitney118

2y

I also understand the neurological aspect of it. I get days where I feel trapped in a thick fog, I'm always forgetting things to the point that I will forget what I'm saying mid sentence and have to start over or repeat the first half again. People think that I'm being rude, like I think they are stupid because I will make my point three or four times but it's actually the fact that I can't remember if I've finished my sentence or not.
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lunar__dude

2y

oh damn dude, I feel that. My parents used to fuss at me all the time when I lived with them for doing that. Words are hard
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Annye

2y

Definitely not alone!! I suffer from GI problems on a daily basis and I never knew it could be due to lupus until not long ago. A lot of neuro problems too.
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lunar__dude

2y

yeah, I didn’t know all my stuff could be related until after I was diagnosed with lupus, which was 3 or 4 years after some of my other diagnoses
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Whitney118

2y

I know how that is! My mom would be like "I get it Whit. I'm not stupid. I understood you the first time..." Or she would finish the sentence, making it a point that I had already said it once... And my dad would cut me off if I was repeating a story or something that had happened to me, telling me he had already heard it a thousand times.
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lunar__dude

2y

that always hurts so bad. My parents do the same crap
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Igglepiggle

1y

I’m suspected lupus and get digestive problems, I also have adhd so my brain isn’t right lol but I don’t know if lupus effects my brain much, though I do think it effects my hormones and that messes with my thoughts and feelings
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JoJo88

10mo

Myself have digestive issues and migraine headaches lots and lots of times I feel best thing you can do is keep mind active …. Work out. Stretches. Drink plenty water stay hydrated and use peppermint essential oils roll onto forhead and temples and back of neck can help as well.

The content in this post is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition.

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