Gastroparesis

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Exactly how I felt off my last appointment, but add to that extreme anxiety that made me physically sick to my stomach with the WORSE headache I ever had and feeling like screaming and crying and bundling up in a ball in my bed covers over me and just not participating in life for a bit... That's how I felt because I got diagnosed with yet ANOTHER autoimmune disorder... #autoimmunedisorders #SjogrensSyndrome #InflammatoryBowelDiseaseIBD #Gastroparesis #Gastritis #Colitis

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Living with gastroparesis

Living with gastroparesis is like being stuck in a body that refuses to cooperate. It’s a chronic illness that slows or stops the stomach from emptying properly, and with it comes a cycle of pain, nausea, vomiting, bloating, frustration, and invisibility that many people on the outside will never understand.

One of the hardest parts is the unpredictability of weight. It is a common misconception that gastroparesis only causes weight loss, when in fact it also causes weight gain for some. Some days, you can barely keep food down, and the pounds fall off in a way that frightens even you. You never know what will be safe to eat, the food that was safe yesterday could lead to a ER today. It's a constant battle between knowing eating will make you sick and starving to a point you want to eat anyway just to make that pain ease, knowing it's going to start a cycle of misery. Noone sees the hours spent doubled over in pain, the nausea that makes eating feel like a punishment, or the exhaustion that comes from your body constantly fighting itself.

And then there are the doctors. Too often, patients with gastroparesis are dismissed, told it’s “just anxiety” or “in your head.” Test after test, appointment after appointment, you feel like you’re screaming into a void, begging someone to believe the pain you live with every single day. The lack of validation can feel just as crushing as the illness itself.

The bloating is another cruel companion. Your belly swells so much it doesn’t feel like your own anymore. It’s humiliating to have strangers smile knowingly at your stomach, assuming you’re carrying a child, when in reality, you’re carrying the weight of an illness no one can see. Clothes stop fitting. Confidence shatters. And still, the world doesn’t understand.

Gastroparesis steals so much—freedom, comfort, relationships, friends, and even the ability to eat without fear. It’s isolating, painful, and relentless. And while you may look “fine” on the outside, the truth is that every meal, every doctor’s visit, every sideways glance at your swollen stomach is a reminder that this illness controls more than just digestion—it takes over your whole life.

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I'm new here!

Hi, my name is Wolflady68. I'm here because
I have been diagnosed with Gastroparesis. The nausea I get is so severe.my doctor has prescribed ondansetron 8 mg. Does anyone know if this works good? I get nauseous every time I eat or drink. #MightyTogether #Gastroparesis

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EDS

Hello all. I have had a lifetime of health issues that have always been assumed to be rheumatological but I never fit all tne criteria. This past year, I have had a new "flair up" with very concerning symptoms including sensorineural hearing loss, ruptured ear drum, visual and visual field disturbances, high ocular pressure, new migrane activity, broken wrist and ankle with delayed healing, gastroparesis, internal rectal hemroids, hernia and more. I am currently seeing specialist who agree this is complicated. Looking into EDS was recommended to me, and I was absolutely shocked to see that almost WORD for WORD and symptom by symptom, I literally fit almost all the 13 subtype. I'm so scared and I'm so confused! How can I fit all of to that large of a degree. I have a wrist surgery in 2 days for a fracture that happened in January and I'm absolutely scared to go under anesthesia now or be cut on after ready the cardio and vascular forms, which again I fit criteria heavily. I have no had an echo but my heart rate and BP are having difficulty being controlled on beta blocker. Can anyone give adive or experience with the possibility of having multiple subtype and if I am putting myself at risk having this surgery. I literally don't even know where to go from here.

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I’m new here!

Hi, my name is LoraCotton.

#MightyTogether I am caregiver to my husband who suffers Gastroparesis, I.T.P. and Generalized Seizure Disorder. On top of that I suspect he suffers POTS too. I intend to ask our PCP about having him tested for POTS at our appointment the end of this month. Beyond that what more can I do to help him managed?

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