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

Posted by trip17 @trip17, Jul 31 5:33pm

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

Hi @trip17 and welcome to Mayo Clinic Connect. That's quite the history and journey you've laid out. I've added your post to the Digestive Health group as well (https://connect.mayoclinic.org/group/digestive-gastrointestinal-problems/). You might be interested in participating is some of these related discussions:

– Chronic Abdominal Wall Pain: https://connect.mayoclinic.org/page/gastroenterology-and-gi-surgery/newsfeed-post/chronic-abdominal-wall-pain/
– Has anyone been diagnosed with Abdominal Wall Pain: https://connect.mayoclinic.org/discussion/has-anyone-been-diagnosed-with-abdominal-wall-pain/
– Complications/symptoms after Gallbladder laparoscopic Surgery https://connect.mayoclinic.org/discussion/nausea-pain-and-headaches-after-gallbladder-laparoscopic-surgery/
– Comparison of Spinal Cord Stimulators from Boston Sci., Nevro https://connect.mayoclinic.org/discussion/comparison-of-spinal-cord-stimulators-from-boston-sci-nevro/

You may also be interested in following the discussions in these groups:
– Digestive Health https://connect.mayoclinic.org/group/digestive-gastrointestinal-problems/
– Neuropathy https://connect.mayoclinic.org/group/neuropathy/
– Sleep Health https://connect.mayoclinic.org/group/sleep-health/

I hope some of these discussions help with your search for answers and that UT Southwestern can help. FYI, Mayo Clinic is seeing patients during the pandemic, but I can understand getting a consult closer to home during these times.

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Hi @trip17, I extend my welcome to you as well. I can identify with about 98% of your story and frustration. The only difference is I did not have a nerve block device implanted.

I had my gallbladder removed in 2007 and didn't find relief until 2010 when I traveled to Mayo Clinic in Rochester to be a part of their Chronic Pain Rehabilitation Program. Up until then I, like you, had every test done that they could think of, all that came back as negative or normal. I was on hydrocodone for pain, Lunesta for sleep, phenergan for nausea, 2 blood pressure medications, and an antidepressant. After spending 3 weeks in Rochester, we learned what was going on. It was hard for me to understand at first because I had trusted that the only way I was getting relief was through the medication I was taking. My doctors explained that it was Opioid-Induced Hyperalgesia. Certain people, depending on their genetics, develop a "tolerence" to pain medicine, while other people can develop Opioid-Induced Hyperalgesia. They are not the same thing. After your body has been on a pain medicine for an extended amount of time opioids can produce the opposite reaction in the nervous system causing hyperactivation, which leads to an increase in the pain a person feels.

They were able to taper me down and eventually off of the medication and several others that I took because of my pain, like my sleep medicine. I added a link about what this is. It may not be what is happening with you, but when I read your post it sounded all too familiar. Have they tried you on any other type of medications for the pain or only the Hydrocodone?
https://www.hss.edu/conditions_opioid-induced-hyperalgesia.asp

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@amandaburnett

Hi @trip17, I extend my welcome to you as well. I can identify with about 98% of your story and frustration. The only difference is I did not have a nerve block device implanted.

I had my gallbladder removed in 2007 and didn't find relief until 2010 when I traveled to Mayo Clinic in Rochester to be a part of their Chronic Pain Rehabilitation Program. Up until then I, like you, had every test done that they could think of, all that came back as negative or normal. I was on hydrocodone for pain, Lunesta for sleep, phenergan for nausea, 2 blood pressure medications, and an antidepressant. After spending 3 weeks in Rochester, we learned what was going on. It was hard for me to understand at first because I had trusted that the only way I was getting relief was through the medication I was taking. My doctors explained that it was Opioid-Induced Hyperalgesia. Certain people, depending on their genetics, develop a "tolerence" to pain medicine, while other people can develop Opioid-Induced Hyperalgesia. They are not the same thing. After your body has been on a pain medicine for an extended amount of time opioids can produce the opposite reaction in the nervous system causing hyperactivation, which leads to an increase in the pain a person feels.

They were able to taper me down and eventually off of the medication and several others that I took because of my pain, like my sleep medicine. I added a link about what this is. It may not be what is happening with you, but when I read your post it sounded all too familiar. Have they tried you on any other type of medications for the pain or only the Hydrocodone?
https://www.hss.edu/conditions_opioid-induced-hyperalgesia.asp

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Wow, thanks. I'll read the link. I guess my question would be what started the pain in the first place if I wasn't on hydrocodone at the time? Also, I'm open to trying anything, but I cannot go to work if I can't take the pain medication. I feel like I have the flu and would have to sit in a chair in my room until we found out if it helps, but THANK YOU SO MUCH for the information Amanda!

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I can definitely understand that. I could not do it on my own, which is why I had to seek medical intervention. My pain started from what they called "phantom gallstone" pain and scar tissue that built up around the surgical site where the gallbladder was removed. They did an exploratory surgery, but they had already started me on the medication. Every time I would ease off of the medication I would get flu like symptoms with intense sweating which was my body going through physical withdrawal even though mentally I was not addicted to them. Your mentality can say I don't need these, but your body has the potential to withdrawal on any medication that you have taken for a long period of time, especially pain medicine. I do wish you the best and hope either what I have provided or what Colleen has provided can help!

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that's exactly what happens! Flu like symptoms, pain and nausea in upper stomach and intense sweating.

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@amandaburnett

I can definitely understand that. I could not do it on my own, which is why I had to seek medical intervention. My pain started from what they called "phantom gallstone" pain and scar tissue that built up around the surgical site where the gallbladder was removed. They did an exploratory surgery, but they had already started me on the medication. Every time I would ease off of the medication I would get flu like symptoms with intense sweating which was my body going through physical withdrawal even though mentally I was not addicted to them. Your mentality can say I don't need these, but your body has the potential to withdrawal on any medication that you have taken for a long period of time, especially pain medicine. I do wish you the best and hope either what I have provided or what Colleen has provided can help!

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@amandaburnett and @trip17 I'm sorry for both of your pain journeys. Pain can be very complex which is why I took interest in your conversation regarding OIH (opiod induced hyperalgesia). I've been on 5mg of hydrocodone/acetaminophen 3 years for Migraine, Cervical Spondylosis, Occipital Neuralgia and Small Fiber Peripheral Polyneuropathy. As my pain is not always controlled well enough by 5mg, and I dont want to increase the opiod mg, I use medical marijuana to pick up the slack. I'm frustrated because in a rare instance when I'm feeling like I dont need a pain pill, I cant seem to go too long without feeling flu like symptoms of body aches, sweats, headaches. The problem is, as much as I want off opiods, they help my neuropathy sensations and pains. I feel it's a catch 22 because, could they be causing additional pain while trying to help? Great question. I will be going to Mayo Jacksonville this October and am fully prepared for them to wean me off safely. I know this is the only way to get to the bottom of whether I experience OIH. I do fear, however, how my pain will be effectively handled. I know Mayo will do everything in their power to provide me a new way. I'm game and hope they dispell all of my thoughts and concerns going forward. I fear my pain will need opiods for the rest of my life and hope they prove me wrong. Thanks for bringing up this topic Amanda. It was good to read your experience with Mayo and I am interested in your after Mayo life. Did all your pain disappear? Was it only caused by phantom gallstone
or did you have other painful conditions? What do you take for pain now and how easy has it been to not use opiods again? Chris, I will be interested in your outcome if you attempt to wean off hydrocodone and/or if any other diagnosis presents to solve your pain puzzle.. I wish you both the very best. Thanks for your time.
Rachel

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You said everything I'm thinking. I want to go to Jacksonville Mayo too, but traveling now is not an option, so I'm going to see if I can be treated here in North Texas.

Liked by lorirenee1, rwinney

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@trip17

You said everything I'm thinking. I want to go to Jacksonville Mayo too, but traveling now is not an option, so I'm going to see if I can be treated here in North Texas.

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Yes, that may be best to get the ball rolling for yourself. I'm on my 2nd rescheduled Mayo appointment due to Covid and sincerely doubt my Oct 5th trip will be able to happen either.

Liked by lorirenee1

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@rwinney

Yes, that may be best to get the ball rolling for yourself. I'm on my 2nd rescheduled Mayo appointment due to Covid and sincerely doubt my Oct 5th trip will be able to happen either.

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Best of luck to you, I know how frustrating it is to not get answers and to have to wait.

Liked by lorirenee1, rwinney

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@rwinney

Yes, that may be best to get the ball rolling for yourself. I'm on my 2nd rescheduled Mayo appointment due to Covid and sincerely doubt my Oct 5th trip will be able to happen either.

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@rwinney So sorry Rachael know how much you where looking forward to it

Liked by rwinney

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@amandaburnett

I can definitely understand that. I could not do it on my own, which is why I had to seek medical intervention. My pain started from what they called "phantom gallstone" pain and scar tissue that built up around the surgical site where the gallbladder was removed. They did an exploratory surgery, but they had already started me on the medication. Every time I would ease off of the medication I would get flu like symptoms with intense sweating which was my body going through physical withdrawal even though mentally I was not addicted to them. Your mentality can say I don't need these, but your body has the potential to withdrawal on any medication that you have taken for a long period of time, especially pain medicine. I do wish you the best and hope either what I have provided or what Colleen has provided can help!

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Hi Amanda: We start to wean off Hydrocodone today. All Doctors agree should. They think I may improve, but they are not convinced that is causing my stomach pain, but could definitely making it worse. At the moment, at least two of them suspect a vascular issue. When I had my Nuclear Stress Test and they injected the Adenosine to make my heart beat faster, the pain in my stomach was excruciating. At first because I was yelling and kicking my feet from the pain they thought I was having a heart attack, but the Dr immediately looked at the EKG and it was all normal. Since the pain was below my heart and was in my upper stomach, technically it's not heart related. We are going to either go to the UT Southwestern Diagnosis Hospital and let them start with vascular tests and go from there, or go to a vascular surgeon first and then to UTSW if it's not vascular. My MD and pain DR are suspecting Chronic Mesenteric Ischemia after learning of this episode. If this is truly the issue, not sure we'd ever have found it if not for the heart tests. At this point I'm actually hoping I have this illness so I can get treatment and get back to life. Thanks again for all your advice!

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@trip17

Hi Amanda: We start to wean off Hydrocodone today. All Doctors agree should. They think I may improve, but they are not convinced that is causing my stomach pain, but could definitely making it worse. At the moment, at least two of them suspect a vascular issue. When I had my Nuclear Stress Test and they injected the Adenosine to make my heart beat faster, the pain in my stomach was excruciating. At first because I was yelling and kicking my feet from the pain they thought I was having a heart attack, but the Dr immediately looked at the EKG and it was all normal. Since the pain was below my heart and was in my upper stomach, technically it's not heart related. We are going to either go to the UT Southwestern Diagnosis Hospital and let them start with vascular tests and go from there, or go to a vascular surgeon first and then to UTSW if it's not vascular. My MD and pain DR are suspecting Chronic Mesenteric Ischemia after learning of this episode. If this is truly the issue, not sure we'd ever have found it if not for the heart tests. At this point I'm actually hoping I have this illness so I can get treatment and get back to life. Thanks again for all your advice!

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@trip17 This is wonderful news!! I truly hope that they find the root cause and they can relieve the pain that you have suffered for this long. I really appreciate the update and would love to know the end result after your appts. 🙂

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@trip17

Hi Amanda: We start to wean off Hydrocodone today. All Doctors agree should. They think I may improve, but they are not convinced that is causing my stomach pain, but could definitely making it worse. At the moment, at least two of them suspect a vascular issue. When I had my Nuclear Stress Test and they injected the Adenosine to make my heart beat faster, the pain in my stomach was excruciating. At first because I was yelling and kicking my feet from the pain they thought I was having a heart attack, but the Dr immediately looked at the EKG and it was all normal. Since the pain was below my heart and was in my upper stomach, technically it's not heart related. We are going to either go to the UT Southwestern Diagnosis Hospital and let them start with vascular tests and go from there, or go to a vascular surgeon first and then to UTSW if it's not vascular. My MD and pain DR are suspecting Chronic Mesenteric Ischemia after learning of this episode. If this is truly the issue, not sure we'd ever have found it if not for the heart tests. At this point I'm actually hoping I have this illness so I can get treatment and get back to life. Thanks again for all your advice!

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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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@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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@hopeful33250 @ trip17 It is interesting in itself that the pain started after gallbladder surgery. My pain also started after gallbladder surgery- although not immediately. Sometimes I wonder if the procedure itself or instrumentation alter the anatomy somehow. I was told my condition was very rare. I was also being treated for another very rare GI condition, caused by bad effects from chemo.
The important thing is that it will be more common to test for vascular problems when working a patient up for abdominal pain.

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