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Ehlers-Danlos Syndrome Online Support Group

Does Anyone Else Have This Problem?


#1

I have been dealing with the GI issues of EDS since I was 8 years old. Nausea, crippling pain in my stomach, and acid reflux. It has come and gone. Lately however all of these symptoms are heightened. They are to the point where I am vomiting multiple times a day. For the past 6-8 weeks, along with the aforementioned issues, I have also been experiencing pain in my spleen area, as well as in my left shoulder blade. I visited my primary to get a referral to a GI specialist (again), and we aren’t sure when we can get an appointment. I was wondering if any of you have had problems like this, possibly involving other organs, and if so, what was causing it and what did you do to help it?

I am honestly desperate at this point, and totally exhausted. Anything that might help would be wonderful.


#2

I have the gastric reflux but none of the other symptoms you describe(yet?). If you’re experiencing severe pain anywhere in your abdomen, (especially if the symptoms are getting worse) do not wait for an appointment. Go to the ER. You need a work-up now, not in weeks or months. This is not something I’d mess with. We need to be our own advocates, as you know, so make noise until someone does tests on you to figure it out. Be nice, but insistent. The squeaky wheel gets the grease. Best of luck to you.