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

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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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@amandaa

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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I'm VERY sorry for your experiences! My husband has gastroparesis and has also developed depression, anxiety and fibromyalgia. He experiences many of your symptoms. He, too, has difficulty at times, trying to face a life in which he has so few truly enjoyable days (and our definition of "enjoyable" has immensely changed). I don't have any answers, but pray you will be able to hold onto faith and hope and that you have family to support you! My husband was prescribed a pain patch instead of taking oral pain meds. The patch seems to provide better round the clock pain control without the highs and lows associated with taking pills. Also, there is less chance of abuse with a patch than will pills. Have you considered a mask and gloves during this pandemic to facilitate your travel to the Mayo? Everyone's comfort level with COVID-19 is different. If you feel you could safely travel, I highly recommend the Mayo. We got nowhere with my husbands problems until we obtained Mayo care. They are amazing!

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Yes, it’s not a good quality of life. I’m hoping the test I’m having Wednesday will find the cause. We have narrowed it down by process of elimination. I am not concerned about catching Covid, it just makes things more difficult. The mask makes me sweat which makes my stomach hurt worse. I don’t think gloves really do anything anyway. As long as you keep hands clean and not touch your face your better off without Gloves. Once we get the results from the vascular Dr we’ll see if we need to go to Mayo. This is pretty much the last thing it can be.

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@amandaa

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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Thanks. I'm praying so hard that this is what it is. We are out of options and I cannot continue to live like this.

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@trip17 - Good luck with your appointment tomorrow!
As I read your last post, it struck me that I used the same words as you do - I can’t continue to live like this- when MALS diagnosis was made and I decided to go through surgery.

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