Severe stomach pain

Yes Functioan Dyspepsia , . Check it out. I have AFib do to Gerd anyone else been told that?

Does anyone struggle with a gnawing burning pain just above belly button, often a little to the right where the head of pancreas connects with duodenum?
The pain radiates to a dull pain in a belt that wraps around my back when I stand. I cannot be up with food in my stomach because the pain becomes unbearable! Lately also nausea after eating but not every time. Lots of rumbling. I have reflux and a hiatal hernia plus IBS and slow gallbladder.
I've suffered many years from pain above bellybutton that has come and gone but since December it has been constant and I've been more or less bedridden. I get some relief a while after eating that lasts one or 2 hours but sometimes that becomes nausea instead and it feels like I ate a soap. To me it feels like my stomach but I have never ever found a single person with esophagus or stomach problems that manifest above belly button. My pain is not under breastbone or heartburn.
For 10 years I have tried to verify what organ causes the pain but failed and now Im stuck in bed with no visual finds on endoscopy (haven't gotten biopsy back yet). No explanation on abdominal mri just asymptomatic gallstones and some fat deposits in liver and pancreas.
I never have cramps and I don't suspect small or large intestine. I would just like to find someone who have that pain pattern

Hi @tinatoren Your symptoms sound very much like my husband’s situation a few years ago. I’ve written about his experience in this discussion: https://connect.mayoclinic.org/comment/610254/
That was 2021. My husband is now off all of his stomach meds. The FD gard and the anti-anxiety meds mentioned in the discussion really worked well for him.

It’s in a support group about Functional Dyspepsia, here’s the link: Help with stomach and abdominal discomfort when lying down
https://connect.mayoclinic.org/discussion/help-with-stomach-and-abdominal-discomfort-when-lying-down/
Hopefully you’ll find some information that’s useful with other members @riflemanz64 @rashida.

As @lvon suggested, has Functional Dyspepsia (FD) been mentioned by your gastroenterologist? Have you tried FDgard?

Does anyone struggle with a gnawing burning pain just above belly button, often a little to the right where the head of pancreas connects with duodenum?
The pain radiates to a dull pain in a belt that wraps around my back when I stand. I cannot be up with food in my stomach because the pain becomes unbearable! Lately also nausea after eating but not every time. Lots of rumbling. I have reflux and a hiatal hernia plus IBS and slow gallbladder.
I've suffered many years from pain above bellybutton that has come and gone but since December it has been constant and I've been more or less bedridden. I get some relief a while after eating that lasts one or 2 hours but sometimes that becomes nausea instead and it feels like I ate a soap. To me it feels like my stomach but I have never ever found a single person with esophagus or stomach problems that manifest above belly button. My pain is not under breastbone or heartburn.
For 10 years I have tried to verify what organ causes the pain but failed and now Im stuck in bed with no visual finds on endoscopy (haven't gotten biopsy back yet). No explanation on abdominal mri just asymptomatic gallstones and some fat deposits in liver and pancreas.
I never have cramps and I don't suspect small or large intestine. I would just like to find someone who have that pain pattern

@loribmt @tinatoren I definitely have GERD as I get chest pain due to acid reflux. I have tried getting off Lanzoprazole but that is the only medication that he,ps with my reflux. I also have occasional stabbing pain in my upper right quadrant, just under the ribs which I just tolerate since no doctor can tell me what causes it, and ultrasounds show nothing.

Thanks for replying!
I'm in Sweden. Never heard of FD guard but I thought peppermint was a big nono since it relaxes esophagial sfincter. I was offered tricyclic meds by a net gastro a few years back but that too relaxes the sfincter.
I don't think I have fantom pain. What I mean by that is yes of course I have a supersensive nerve after 30 years of acid exposure but up until 3 months ago I did get better from ppis even if it took a long time. Also when going off them my symptoms would come back eventually and worsen over time. My problem now is that I have neurological damage since December with total body paresthesia including face, nose, lips plus trembling lips and myoclonal jerks, dizziness head pressure in back of head and I'm pretty much bed ridden. I have been off acid blockers for weeks and slowly my stomach pain have increased to an unbearable level where I feel like someone is trying to cut me in 2 right above belly button. Since eating and baking soda has taken the edge off for a while I now assume it's a stomach and/or esophagus problem.
If it was nerve pain it would be constant and not get worse and worse. My fear now is that both pepcid and Prilosec cause my nerve damage to worsen in which case I have no hope because I can't live with stomach pain on this level.
The people I read about had their paresthesia go away after discontinuing meds but mine hasn't so I don't know what is happening I just know that every hour is torture!

@loribmt @tinatoren I definitely have GERD as I get chest pain due to acid reflux. I have tried getting off Lanzoprazole but that is the only medication that he,ps with my reflux. I also have occasional stabbing pain in my upper right quadrant, just under the ribs which I just tolerate since no doctor can tell me what causes it, and ultrasounds show nothing.

Oh my gosh, @tinatoren, your symptoms sound awful! I just have to ask, did you quit the Prilosec and Pepcid cold turkey? If you’ve been on those for years and just stop there is such a thing as a rebound effect. I took protonix for several years during chemo and had to slowly taper so that I didn’t have acid rebound. I still did have some issues, but it was mitigated with taking OCT antacids to compensate.

My husband also had reservations about using oil of peppermint and the recommendation of FD Gard from his gastroenterologist. But both worked quite well in easing the ‘cramping’ from his Functional Dyspepsia.
https://www.healthline.com/health/benefits-of-peppermint-oil#uses
What did help the most was in the link I posted before. He tried a tricyclic med first but that didn’t have the desired results, so his doctor switched to another anti-anxiety med. He was suspicious too because he felt if that the sphincter was relaxed it would allow more acid to reflux. But that wasn’t the case and it greatly improved his condition. His ulcer healed completely.
Your situation sounds pretty dire. Have you had a recent endoscope to rule out an ulcer?

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!