Does anybody have gnawing stomach pain just above bellybutton?

Yes. I had an endoscopy in January and they couldn't see anything visually wrong. I'm still waiting for biopsy results. I've had 9 endoscopies over some years and only one showed esophagitis grade 1 despite unbelievable pains. I would have cough, reflux, wheezing and burning pain and hunger during the night. I recently came across an article by a doctor called Dr Jamie Koufman that actually talks about that type of reflux. I also found articles on pretty severe irritation of the vagus nerve even from non erosive esophagitis. The theory is that the acid penetrates the mucosa layers all the way to the nerve even though you can't see it. I used to always get better with Prilosec but it took a long time. This december however I had eaten 40mg of Nexium and not gotten better plus I developed the nerve and brain issues. At first I thought it might be the vagus nerve but then I read that my facial tingling must come from brain because the facial nerves are in the skull. At the same time some reflux people swear the have tingling lips?
It's all so strange. Hovever I also feel dizzy and have myoclonus jerks of head when I use my shoulders etc so something is going on in my brain too.

@loribmt @tinatoren my GERD is due to a hiatal hernia which I have had for many years. I have tried tapering off the Lanzoprazole (generic Prevacid) but that has not helped me to come off it. I take just one capsule before bedtime and the night I skip one, I suffer.

Yes, I too have tingling lips and have wondered why!

Yes. I had an endoscopy in January and they couldn't see anything visually wrong. I'm still waiting for biopsy results. I've had 9 endoscopies over some years and only one showed esophagitis grade 1 despite unbelievable pains. I would have cough, reflux, wheezing and burning pain and hunger during the night. I recently came across an article by a doctor called Dr Jamie Koufman that actually talks about that type of reflux. I also found articles on pretty severe irritation of the vagus nerve even from non erosive esophagitis. The theory is that the acid penetrates the mucosa layers all the way to the nerve even though you can't see it. I used to always get better with Prilosec but it took a long time. This december however I had eaten 40mg of Nexium and not gotten better plus I developed the nerve and brain issues. At first I thought it might be the vagus nerve but then I read that my facial tingling must come from brain because the facial nerves are in the skull. At the same time some reflux people swear the have tingling lips?
It's all so strange. Hovever I also feel dizzy and have myoclonus jerks of head when I use my shoulders etc so something is going on in my brain too.

Yes I have a hernia too.
The sneaky thing is my reflux is silent in the beginning ( meaning I don't get it in my mouth or have heartburn) so I go off the meds thinking Im fine and then by the time I realise that Im in trouble then I'm in so much trouble it takes months to heal. I'm just afraid I don't tolerate the ppis. I guess eventually I will have to try again. Maybe try another kind like the one you have. For now I will see if pepcid helps. Too bad we have to sleep. If I never layed down I would probably do much better!

A couple things I want to mention…maybe another avenue or two to explore:
Median Arcuate Ligament syndrome or MALS… it’s a compression of the Celiac artery to the stomach and can cause similar symptoms to what you’re experiencing.
https://www.mayoclinic.org/diseases-conditions/median-arcuate-ligament-syndrome-mals/symptoms-causes/syc-20505001
A group discussion in our forum with other members of MALS might be worth a peek to see if this is familar to you.
https://connect.mayoclinic.org/discussion/mals-and-lower-abdomen-chronic-pain/
The other is the possiblity of a blocked Celiac artery, which a close friend of mine experienced. Her symptoms were very similar to yours and debilitating. It took some time for a diagnosis. Nothing would show up on the endoscope or MRIs. Finally a relentless honey badger of a doctor found the cause…it was a blocked Celiac artery. My friend had surgery and which brought immediate relief 2 years ago and she’s still going strong.

I’m so sorry you’re going through all of this. How miserable. What’s concerning are the other neurological symptoms your having. Have you mentioned these to your doctor as well?

@loribmt I am in Canada so on a government health plan. Doctors will not order any test the government will not pay for. And the primary physician decides whether you need to see a specialist for further testing - we cannot ask for investigational testing. Even if the doctor orders, say, an MRI if the MRI technologist decides the MRI is not necessary based on results of a CT scan you cannot get that MRI. I have asked my doctor for an MRI after ultrasounds and CT scan did not reveal cause of the pain in my upper right quadrant, as well as the mysterious bulge I have had for years on my lower right side just above my hip bone but the radiologist has deemed an MRI unnecessary. Everything really boils down to what the government plan (in the case of Ontario, the OHIP plan) will approve or disapprove.

@loribmt which specialist does one have to see to investigate a blocked celiac artery? A year ago I was referred to a gastroenterologist who tested me for celiac disease and nothing showed up with that test. Can’t remember if it was a blood or stool test.

A couple things I want to mention…maybe another avenue or two to explore:
Median Arcuate Ligament syndrome or MALS… it’s a compression of the Celiac artery to the stomach and can cause similar symptoms to what you’re experiencing.
https://www.mayoclinic.org/diseases-conditions/median-arcuate-ligament-syndrome-mals/symptoms-causes/syc-20505001
A group discussion in our forum with other members of MALS might be worth a peek to see if this is familar to you.
https://connect.mayoclinic.org/discussion/mals-and-lower-abdomen-chronic-pain/
The other is the possiblity of a blocked Celiac artery, which a close friend of mine experienced. Her symptoms were very similar to yours and debilitating. It took some time for a diagnosis. Nothing would show up on the endoscope or MRIs. Finally a relentless honey badger of a doctor found the cause…it was a blocked Celiac artery. My friend had surgery and which brought immediate relief 2 years ago and she’s still going strong.

I’m so sorry you’re going through all of this. How miserable. What’s concerning are the other neurological symptoms your having. Have you mentioned these to your doctor as well?

@tinatoren my chest pain can be triggered by merely bending forward as in picking up something from the floor, or doing anything that requires me to bend forward - even simply vacuuming! In those instances, and even if woken up from sleep with chest pain, I find a few sips of water eases the pain within a minute or two. Sometimes the pain will reoccur but I keep taking sips of water when they do and eventually I am pain free. I always have a bottle of water on hand.