Chronic upper stomach Pain/Nausea going on 4 yrs. ALL TESTS NEGATIVE

Posted by trip17 @trip17, Jul 31, 2020

I have been dealing with upper stomach pain and nausea for 4 years. Started two years after gallbladder removal. On 12/27/18 I had a Nevro H10 nerve block device implanted. Within a couple of months, the device was working well, probably 80% improvement (which I’d take now!). I was back to working out, biking, felt like I got my life back! Then after about 4-5 months, the symptoms started coming back. It’s been 14 months now and Nevro still can’t capture the working setting again. In the meantIme, the problem has worsened in the past 4-6 months. I wake every day with pain in the middle of my stomach, just below rib cage. It’s more of an “upset stomach/nausea” pain and usually let’s up a little about an hour after waking up. Sometimes it can also make me feel “fluish” and overall crappy, especially if I exert myself at all. If I start working on a project at home, I wIll start to feel lousy and have to rest. It will also sometimes be accompanied by extreme sweating. I cannot even play a simple round of golf. I’ve had EVERY Gastroenterology test and all is normal. Even a camera pill. I also had a series of heart tests done and everything is fine. Blood tests had shown a very low Iron levels, but we did iron IV’s to get that back up. In addition to the stomach, my feet started going numb and getting pain with pins and needles, especially when I sleep. Yesterday, I was diagnosed with Neuropathy and some nerve damage in my feet. On Monday I’m having tests to determine what is causing it. I do not have diabetes. I am also having a glucose tolerance test Monday. Neurologist said “it’s possible” that what’s causing my feet Neuropathy “could” be causing my stomach issue. I personally don’t believe that. Started seeing a Chiropractor again too. He feels the stomach pain could be gas/air bubbles that are getting trapped in my esophagus area. He’s working the area to stimulate the nerves and loosen the gas pockets.I also use a CPAP machine for sleep apnea, which alarms him because it forces constant air into my stomach all night long. I’m switching to a bi-pap machine to see if it helps. My MD tried a steroid pack last week, but it didn’t help. In 6 months I’ve had just ONE day (actually 3/4 of day) of no pain and normal energy. It’s very hard and I cannot live like this anymore. Since I can’t travel to the Mayo Clinic due to the Pandemic, I am having my MD refer me to a local Diagnostic clinic/hospital. The closest one to me is UT Southwestern in the Dallas area. Hopefully they can figure out what is causing this. All Liver and Pancreas tests are also fine. I’ve had a HIDA scan to make sure the “plumbing” where my Gallbladder was removed is not causing it (it’s in that area). This problem can vary day to day and even hour to hour in intensity and can go from “ok” to bad and back again. The ONLY thing that takes the pain away is Hydrocodone. I had to take anywhere from “zero” to 1.5 pills to control it for the last 5 years. Now over the past 4 months, I have had to take 2 to 3 pills per day to control the pain and nausea (I also take nausea prescription, but it doesn’t work well anymore. I am very concerned about addiction so working with my Doctor and making sure I take no more than three in a day. As far a prescriptions, I take Trintellix and Adderall (one pill each) in the morning along with a new blood pressure med I just started taking a month ago. I have not been able to sleep for years so I take Clonazepam for sleep. No food allergies or gastrointestinal problems. If anyone has a guess or if any of this sounds familiar, I’m open to ANYTHING! I also do Cryotherapy once in a while and the cold does help, but it doesn’t last. I’m asking my pain Dr about a SPLANCHNIC pain shot to see if he thinks it will hep until we can figure this out or get my NEVRO device to work. THANK YOU!!!
Chris

@hopeful33250

Hello @trip17,

I too am excited to hear that your heart test might have revealed the reason for the pain you have had in your stomach. Since you mentioned in your first post above that your pain started after gall bladder surgery, I thought you might be interested in know that there are many problems that can occur after gall bladder surgery. One of these complications is called, Sphincter of Oddi Dysfunction. Here is a link to a discussion on Connect about this post-surgical problem, https://connect.mayoclinic.org/discussion/i-have-sphincter-of-oddi-dysfuncfion-it-causes-severe-upper-abdominal-pain/?orderby=DESC#chv4-comment-stream-header.

I'm also wondering, @trip17 if your gall bladder surgery was laparoscopic or invasive? If it was laparoscopic you might be interested in this discussion on Connect, https://connect.mayoclinic.org/discussion/nausea-pain-and-headaches-after-gallbladder-laparoscopic-surgery/?pg=4

Finally, here is a video presentation by a Mayo physician, Dr. Mark Topazian, where he discusses possible problems after gall bladder surgery, https://www.youtube.com/watch?time_continue=14&v=uooaeA9tiv0&feature=emb_logo

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Hello Teresa. They ruled out sphincter of Oddi dysfunction. My Gallbladder surgery was laparoscopic but it took longer than anticipated due to the stone being stuck just outside the gallbladder. They had to get the stone back in the gallbladder before they could take it out. The Gastroenterologists have said they’ve done all they can do. Will have tests this week (hopefully) by the vascular surgeon to see if clogged veins are causing my stomach issues. I’m also seeing the Neurologist to get the blood test results for the neuropathy that came out of nowhere a couple months ago. This is a big week coming up for me to get answers finally.

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@astaingegerdm

@trip17 – Very interesting to see That you may have a vascular problem causing the pain. There would be a possible way to cure you.
It reminds me of my abdominal pain caused by decreased blood supply to the intestines after meals. There was a large ligament pressing on the celiac artery. The ligament was cut and blood flow restored. A few months later I needed a stent to keep the vessel open. This condition is called Median Arcuate Ligament Syndrome—MALS.
The pain I had and what you experienced during your heart test is called abdominal angina. Insufficient blood supply.
Your next vascular test will show where the problem is.
Please get back to us about the outcome.

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That sounds like what I have. I guess we’ll know as soon as I get in to see the vascular surgeon. Hopefully this week. 🙏🏼

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@mutter3

I also am in Texas and travelled to Rochester two weeks ago. No problem. The doctors at UT Southwestern are great. Many of them trained at Mayo. Good luck!!

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I’m going to see the vascular surgeon before going to UTSW as I can get in to see him faster. If it’s vascular then I won’t have to go to UTSW, but setting it up just in case. What I don’t understand is where this Neuropathy came from a couple months ago. It just came out of nowhere, but I’m more worried about my stomach. It’s been too long, too many tests and too many days of not feeling well.

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@trip17 I fully understand that you are most worried about your abdominal pain now- one thing at a time!
I had my severe abdominal pain for many years and I had a variety of GI problem -so I thought it was all related somehow. There would be times at work when I just wanted to scream. In retrospect, it was always after meals
I hope they find that you have a vascular problem that is fixable.
The neuropathy is a mystery, since you don't have diabetes. Did you have nerve conduction tests? What about lower extremity blood flow testing?
With neuropathy in the feet one has to worry about injuries that one doesn't necessarily feel but can cause infection.
Good luck this week!

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The Doctor is scheduling the Vascular Doctor today so I hope to see him very soon. I have no idea where the neuropathy came from. I was put on Trokendi for about a month and it made my stomach worse, but as I came off it, I had horrible withdrawal symptoms that lasted 22 days, first seven were hell. The neuropathy started as I came off the Trokendi. Makes no sense.

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@trip17 I looked up side effects of Trokendi and they include tingling of arms and legs and decreased skin sensation. It can continue after drug is stopped, but if you still have it you would have the doctors check it out.

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@trip17

The Doctor is scheduling the Vascular Doctor today so I hope to see him very soon. I have no idea where the neuropathy came from. I was put on Trokendi for about a month and it made my stomach worse, but as I came off it, I had horrible withdrawal symptoms that lasted 22 days, first seven were hell. The neuropathy started as I came off the Trokendi. Makes no sense.

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Hi @trip17 Do you have a date for the vascular appointment yet?

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Same here.3 years now with the same pain and peculiar burning pain similar to being extremely hungry in the top middle of my abdomen right between my breasts..3 to 4 mushy bowel movements per day, often resulting in diarrhea. 30 minutes after a meal I had better be close to a restroom.. Been on Zofran 3 years and other pills, but absolutely nothing helps.. affecting my blood pressure also. Only had an ultrasound but 'everything looked good'… got an appointment with a new gastroenterologist next week.. wish me well.

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Hi Amanda: Had my vascular appointment today. They don't think it's a vascular or artery clog, so they didn't bother with the scheduled sonogram. Instead she suspects it's MALS (Median Arcuate Ligament Syndrome). Having a test on Wednesday to check for that.

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@szaiko

Same here.3 years now with the same pain and peculiar burning pain similar to being extremely hungry in the top middle of my abdomen right between my breasts..3 to 4 mushy bowel movements per day, often resulting in diarrhea. 30 minutes after a meal I had better be close to a restroom.. Been on Zofran 3 years and other pills, but absolutely nothing helps.. affecting my blood pressure also. Only had an ultrasound but 'everything looked good'… got an appointment with a new gastroenterologist next week.. wish me well.

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Hi @szaiko, I see you joined in July, but this is your first post so I wanted to welcome you to the Connect community. I am sorry to hear that you are having GI issues. I would be interested to know if the gastroenterologist does a stool test. A lot of your symptoms are very similar to Helicobacter Pylori (H pylori). Have you seen a GI specialist in the past for this? 3 years is a long time to go without an answer.

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@trip17

Hi Amanda: Had my vascular appointment today. They don't think it's a vascular or artery clog, so they didn't bother with the scheduled sonogram. Instead she suspects it's MALS (Median Arcuate Ligament Syndrome). Having a test on Wednesday to check for that.

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Oh wow @trip17, Well let me share the link to our MALS discussion with you. It is a very extensive conversation, but there is a lot of good information here. https://connect.mayoclinic.org/discussion/median-arcuate-ligament-syndrome-mals/

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@amandaburnett

Hi @szaiko, I see you joined in July, but this is your first post so I wanted to welcome you to the Connect community. I am sorry to hear that you are having GI issues. I would be interested to know if the gastroenterologist does a stool test. A lot of your symptoms are very similar to Helicobacter Pylori (H pylori). Have you seen a GI specialist in the past for this? 3 years is a long time to go without an answer.

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Yes, a year ago I had a colonoscopy and was diagnosed at that time with gastritis and esophagitis.. which a biopsy of a colon polyp came back precancerous.. Fodmap diet and pantoprazole 40 mg .. which did nothing.. hoping the new gastroenterologist can help.. no stool test has been done..the pictures of my colon were greatly inflamed..

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