Does anybody have gnawing stomach pain just above bellybutton?

Posted by tinatoren @tinatoren, Mar 18, 2023

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

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@loribmt I have mentioned it to anyone (my own physician, several specialists to whomI have been referred for various other problems, etc.) who will listen and they all just shake their heads and say they have no idea why I have this bulge. Everybody can feel it, but nothing shows in ultrasounds or the one abdominal CT scan I had. Even a colonoscopy does not show up anything. It feels like a hernia but there is n pain when palpated. Some doctors say it’s just fat, but often I feel I am carrying a sack filled with something in this area. 🤷🏼‍♀️ This is why I have asked my doctor several times to get me an MRI but if the radiologist says it is not necessary she has to abide by his assessment. If a procedure is deemed “unnecessary” OHIP will not pay for it. That bulge is a real mystery - I know I have rolls of fat but this feels different.

Anyway, this is something other than my GERD and the pain in my upper right quadrant (which too has no apparent cause, as the GERD does).

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@rashida

@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.

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Yep sounds just like it is here in Sweden! Luckily I had to sell my apartment this fall and move in with mom because of the rising cost of living and the fact that my mortgage would tripple. So there was some money left over and I could order an out of pocket mri on brain and abdomen for 2500 us dollars. I opted out of contrast though because I'm afraid of it but maybe my next brain scan will have to with contrast. We do have clinics for mris and colonoskopys etc that you can pay for. Health care really sucks here. Primary doctors decide everything!
We have good hospitals in Stockholm and good research in Sweden but ordinary people never benefits because primary docs don't give referrals.

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@saucy

I had burning in my upper intestine also even having surgery for reflux. Turns out I can't digest fiber very well and it sits in my upper intestine fermenting and causing gas and acid and bad pain and even pushes up me rib cage ! I had to cut out all fruit, most vegetables and breads, pastas, etc! I know we're told we need these foods but some people like me have a malabsorption problem for whatever reason. Once I eliminated it the pain went away almost immediately. Every now and then I eat some fruit which I love and get the pain within the next several hours! Love salads but had to cut that out also! Try the elimination diet, you may find it's your diet!

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Yes. I cannot eat fruit or fresh vegetables anymore.
All I eat now is chicken, beef, glutenfree pasta, rice and boiled vegetables. I hope I can find what's wrong because I don't think it's coming from intestines.

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@tinatoren

Yep sounds just like it is here in Sweden! Luckily I had to sell my apartment this fall and move in with mom because of the rising cost of living and the fact that my mortgage would tripple. So there was some money left over and I could order an out of pocket mri on brain and abdomen for 2500 us dollars. I opted out of contrast though because I'm afraid of it but maybe my next brain scan will have to with contrast. We do have clinics for mris and colonoskopys etc that you can pay for. Health care really sucks here. Primary doctors decide everything!
We have good hospitals in Stockholm and good research in Sweden but ordinary people never benefits because primary docs don't give referrals.

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@tinatoren
I’m born in Sweden and grew up there so I know exactly what you are talking about.
The primary doctors are too busy and seem to lose interest. They all know they have to limit expensive tests.
My daughter lives there now and has great difficulty getting a diagnosis for her exhaustion. She just had to decrease her working hours. She has found a new vårdcentral with a doctor who tries to help. He’s referring her for a sleep study- it will take 4-5 months to get an appointment!
Have you tried one of the private clinics?

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@astaingegerdm

@tinatoren
I’m born in Sweden and grew up there so I know exactly what you are talking about.
The primary doctors are too busy and seem to lose interest. They all know they have to limit expensive tests.
My daughter lives there now and has great difficulty getting a diagnosis for her exhaustion. She just had to decrease her working hours. She has found a new vårdcentral with a doctor who tries to help. He’s referring her for a sleep study- it will take 4-5 months to get an appointment!
Have you tried one of the private clinics?

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Most private clinics only take people with private healthinsurance. If you have that a whole world opens up but I can never get that since Im on disability for fibromyalgia since meny years. There are no neurologists that receive paying customers. You have to have a referral.
I could get some mris and things like a colonoscopy but not much else is offered. We have such a huge health crisis here in Sweden and such a shortage of doctors. The patient safety is threatened.
I've been 90 percent bedridden since December and if I have a condition that could have benefitted from for example steroid treatment it's too late now.
The pain and suffering people are subjected too is unbelievable! The only lucky ones are the standard heartattack or traffic accident kind of injuries which get treatment right away. Unusual diseases or cancer usually get diagnosed way too late.
Primary clinics have a range of standard bloodtests and if you pass those they usually don't want to go further.
Which is insane since 90 percent of early cancers and hundreds of other diseases do not show up on standard blood panels.
I think a lot of countries are struggling now though. I hear stories from US, Australia, Canada and lots of countries about the struggle people have to get medical care. In the US it comes down to what healthinsurance you have.
BUT one important factor that is mostly overlooked is gender and employment.
If you are a man with employment here you will get better help. If you are a woman you tend not to be believed and if you are a retired woman they can bury you in waiting time because the doctors dont have to sign off on sickleave and they don't have to explain to an employer why you're absent for 6 months waiting for a bunch of tests.

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@saucy

I had burning in my upper intestine also even having surgery for reflux. Turns out I can't digest fiber very well and it sits in my upper intestine fermenting and causing gas and acid and bad pain and even pushes up me rib cage ! I had to cut out all fruit, most vegetables and breads, pastas, etc! I know we're told we need these foods but some people like me have a malabsorption problem for whatever reason. Once I eliminated it the pain went away almost immediately. Every now and then I eat some fruit which I love and get the pain within the next several hours! Love salads but had to cut that out also! Try the elimination diet, you may find it's your diet!

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@saucy yes, a doctor had said surgery for a hiatus hernia leaves you with more problems than it is worth, which is why I have never had surgery for it.

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@tinatoren

Thanks for the info. Wow there are so many diseases out there that you never heard of. My pain gets relived about 40 min after eating and that is provided I'm laying down. It usually stays better until my stomach starts getting emptier BUT if I stand up with food in my stomach the pain comes back right away. So it does seem my stomach is weighted down and pulls on some ligament or nerve when I stand. I also get heartflutters when standing and a strange pulling feeling in my chest. Also when I sneeze or cough I can get tiny nerve shocks across chest and into arms. So that part would probably match a very inflamed esophagus but I have no visual damage so I could be wrong. I do wake up with pain at night.
Yes my neurological symptoms are very worrying. It started acutely and I was cramping and jerking intensely in my body. The myoclonic jerks have subsided lately and are not happening so often.
I also feel that my arms are weaker and I do think I have nerve damage in my right arm but I don't know if it the pinched kind or the destroyed kind. My lips tingle when I eat and my nose tingles off and on and I have pain inside nose that comes and goes. I also get these waves of vibration tingles in scalp and arms legs etc plus internal vibrations that also fluctuates. I'm waiting for another brain mri, spinal tap and cervical spine mri.
Like I mentioned here before Im afraid it was a reaction to Prilosec and nexium. I'm so very afraid to try them again. I'm on pepcid now but they go straight into the brain so they could potentially have a bigger risk of causing neuropathy. It's all a mystery and I just have to keep trying to find the answers. All I know for sure is that Ive acid coming into my esophagus for 30 years and that I had no idea until 2014 that I had a hernia. Nor did I understand the severity of reflux disease until 2019.

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@tinatoren since your stomach pain (the gnawing) is relieved after eating seems to suggest hyperacidity in your stomach. Prilosec and Nexium apparently reduce acid, but perhaps they are formulated in a way that your body cannot tolerate? Have you tried Prevacid (generic name is Lanzoprazole) which also is an acid reducer but might be tolerated better by you? Your doctor may prescribe one in the morning and one at night to start but once the acid is under control you could reduce dosage to one a day (in your case, one in the morning)?

My problem is the opposite of yours. I definitely cannot lie down after eating or drinking or else I would end up regurgitating acid and stomach contents (even though I have the head of my bed elevated), eventually getting chest pain. I have to make sure I stop eating at least two - preferably four - hours before I go to bed. Then I have to take the Lanzoprazole (generic of Prevacid) before I get into bed. The head of my bed also needs to be on risers to keep it elevated, to prevent any acid going up into my esophagus.

I used to take one Lanzoprazole in the morning and one at bedtime, but that seemed to dry up most of
my stomach acid, which caused digestive problems because I guess one needs at least some acid to break up food in the stomach. So I switched to taking just one capsule at night, since bedtime is when I did not want or need acid in my stomach. 🤷🏼‍♀️

REPLY
@astaingegerdm

@tinatoren
I’m born in Sweden and grew up there so I know exactly what you are talking about.
The primary doctors are too busy and seem to lose interest. They all know they have to limit expensive tests.
My daughter lives there now and has great difficulty getting a diagnosis for her exhaustion. She just had to decrease her working hours. She has found a new vårdcentral with a doctor who tries to help. He’s referring her for a sleep study- it will take 4-5 months to get an appointment!
Have you tried one of the private clinics?

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@astaingegerdm @tinatoren yep - that sounds exactly like what it is here in Ontario, Canada, especially in smaller cities and towns. Doctors are so burned out they lose interest and don’t want to take on any more patients.

I just moved from a big city to a smaller city six months ago and still have no hope of finding a physician because none are taking on new patients. To be assigned a physician you have to register with the government’s health department, but before they will register you, you have to “fire” your previous doctor, but that registration does not guarantee you will get another doctor - you just get out on a long waiting list u til they can find you a doctor who is willing to take on new patients! Unfortunately my physician is a two hour drive away now and not easy to get to during our six month long winters and she does not know of a physician here to who she can refer me, which really would be the best way to get another doctor. My dermatologist knew of a dermatologist here and she referred me to him but I have had to wait seven months to see him. He received the referral in September last year, and I was given an appointment by his office to see him in May this year! Don’t know how good he is, but he’s all I’ve got - and only for treatment of my psoriasis. Under our government health plan rules he will not treat me for anything else.

REPLY
@rashida

@tinatoren since your stomach pain (the gnawing) is relieved after eating seems to suggest hyperacidity in your stomach. Prilosec and Nexium apparently reduce acid, but perhaps they are formulated in a way that your body cannot tolerate? Have you tried Prevacid (generic name is Lanzoprazole) which also is an acid reducer but might be tolerated better by you? Your doctor may prescribe one in the morning and one at night to start but once the acid is under control you could reduce dosage to one a day (in your case, one in the morning)?

My problem is the opposite of yours. I definitely cannot lie down after eating or drinking or else I would end up regurgitating acid and stomach contents (even though I have the head of my bed elevated), eventually getting chest pain. I have to make sure I stop eating at least two - preferably four - hours before I go to bed. Then I have to take the Lanzoprazole (generic of Prevacid) before I get into bed. The head of my bed also needs to be on risers to keep it elevated, to prevent any acid going up into my esophagus.

I used to take one Lanzoprazole in the morning and one at bedtime, but that seemed to dry up most of
my stomach acid, which caused digestive problems because I guess one needs at least some acid to break up food in the stomach. So I switched to taking just one capsule at night, since bedtime is when I did not want or need acid in my stomach. 🤷🏼‍♀️

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Yes. I do regurgitate stomach contents. It's just that the situation is so bad that I cannot sit or stand with food in my stomach that I have to lay down. I suspect that standing up puts weight on the ligaments that hold up stomach and if the esophagus and hernia is inflamed the law of gravity might irritate it. I have no other theory. My particular problem that has gotten me to this situation is that I get extremely hungry when laying down and the hunger is so intense that If I don't eat I would a) not sleep one minute b) get a bad migraine attack c) get an inflamed esophagus from acid Reflux coming from my empty stomach. This syndrome has held me hostage since my 20ies. I'm now 60. I have seen many doctors complaining about this since the 90ies but none warned me that I could have a reflux disease or develop a hernia from eating every night. I didn't know what a hernia or reflux was until 2014.
Now the damage is done. I tried Pepcid for 2, 5 days and the stomach got better but my neuroligal symptoms got a worse with headpressure and head jerking. Plus my Rosacea explodes, face flushes badly and I got 2 migraine attacks. Since I was on Prilosec and nexium when I got my brain damage or whatever it is I am superafraid to try any ppi again before I get some answers. But my stomach Hurst so bad I can't even be up 15 min. I have a contrast mri of brain and cervical spine on the 31st. I m trying to hold on but Its very hard.
What on earth did people do before pepcid and ppis??
Did they all just die of esophageal cancer and or pain? I need acid blockers so badly but I don't want to destroy my brain. I m already starting to have nerve damage in my right arm. If it was just tingling and pain and jerking and trembling then it could be any neuro motor disease or whatever. The strange thing though is the intense pressure. It's right in the back of my skull where the neck vertebrae goes into my skull. The more I m up and move my head the more intense the pressure and the ringing in my ears. Then when laying down my head jerks from side to side when I relax. It is not like some obscure nerv issue where your brain feels normal but your limbs do funny things. This is inside my brain and it can feel like I'm passing out just by closing my eyes! I'm super dizzy but I have no balance problems unless I tilt my head back then I fall backwards. There must be something wrong in the cranial nerve area but I don't know what.

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@tinatoren

Yep sounds just like it is here in Sweden! Luckily I had to sell my apartment this fall and move in with mom because of the rising cost of living and the fact that my mortgage would tripple. So there was some money left over and I could order an out of pocket mri on brain and abdomen for 2500 us dollars. I opted out of contrast though because I'm afraid of it but maybe my next brain scan will have to with contrast. We do have clinics for mris and colonoskopys etc that you can pay for. Health care really sucks here. Primary doctors decide everything!
We have good hospitals in Stockholm and good research in Sweden but ordinary people never benefits because primary docs don't give referrals.

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@tinatoren wow - it seems the Swedes are not much better off than we Canadians! It is ironic that the two countries - Sweden and Canada - are known to have the highest taxes, yet they provide the least in healthcare!

My husband and I are both retirees living on pensions. Fortunately he has a small company pension in addition to the government pension but because I was a homemaker most of my married life I have a very small pension income - just the bare minimal government pension. We live on our combined pensions that just get us through each month with little or nothing left over at the end of each month. Very little help from the government here either, for seniors.

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