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

Interested in more discussions like this? Go to the Chronic Pain Support Group.

@rwinney

@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

Jump to this post

Hi @rwinney and @trip17, thank you so much for sharing your journey with us so far. @rwinney, Your diagnoses of Migraine, Cervical Spondylosis, Occipital Neuralgia and Small Fiber Peripheral Polyneuropathy sounds not only painful, but a daunting trek to navigate through. I can tell you that while my Mayo experience was amazing, it was still an uphill battle to recover and maintain a healthy sobriety and normal way of living with what I still know to be "bouts of chronic pain". The positive spin to this story is I now know "roughly" what the cause is and how to handle the situation properly without medication thanks to Mayo's After Care for Chronic Pain Patients.

My first tool that I want to share and recognize, is they have you establish a mantra. Something that you truly believe in your heart that makes you feel better and motivates you in taking the daily steps that you need to induce that positive change. Mine was very simple and I will explain it. My daughter and I have always enjoyed putting on makeup, learning new techniques, keeping up with trends and looking our best despite what the day has in store for us, so every morning I got up, I took a shower, I did my hair and I put on makeup....even if I had a sleepless night (what I called, "being a sheet ninja" and cover kicking all night) or if I had tapered down a dose the day before and felt awful. My mantra was, "If I look good I feel good, If I feel good I do good, If I do good I am successful and I want to be successful!"

While that particular saying may not work for everyone, it did work for me, and I know I always felt a little better when I was fresh out of the shower and ready to start my day even if I was in some sort of pain. I am no longer on any sort of pain medicine and only take over the counter pain relievers for headaches and minor aches and pains as needed. I have informed all of my regular physicians of my past with pain medicine so that should I ever need anything major, they are sure to reference my medical record and handle it in a very sensitive and appropriate manner.

As far as the pain itself, it significantly decreased after stopping the opioids. The scar tissue is still there, but exercise and stretching helps tremendously as it loosens up the areas that need it and increases the muscles that need to be tougher to counteract the weakness. We (both myself as well as my GI doctors) found that due to multiple surgeries, my upper abdomen has a high susceptibility to trapped gas and air which can cause intense pain that does not feel like gas at all. It feels like the pain cuts me in half and I am going to die if I am being completely honest. The good thing is I can handle this pain now with antacids, specific yoga stretches and a little bit of focused time.

I really hope that both of your appointments go well and look forward to hearing about them. Besides the medication,is there something in either of your daily routines that you find even remotely successful in taking your mind off of the pain that you experience?

REPLY
@trip17

Thank you! That is exactly what three of my Doctors are now suspecting now because When they injected Adenosine during the stress test my upper stomach pain became EXCRUCIATING. Because that drug constricts arteries to make the heart work harder, if something in my upper stomach has a clog, this drug would have basically closed it causing the pain. I’m seeing a Vascular Specialist hopefully next week. How was your treated and how long until you felt normal? I’ve been sick so long I don’t remember what normal feels like. -Chris

Jump to this post

@trip17 - I’m my case they removed the ligament that sat on the artery. Felt better at once. Pain returned and they placed a stent in the still deformed artery to keep it open. So far so good! Felt normal at once again.

REPLY
@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.

Jump to this post

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!!

REPLY
@amandaa

Hi @rwinney and @trip17, thank you so much for sharing your journey with us so far. @rwinney, Your diagnoses of Migraine, Cervical Spondylosis, Occipital Neuralgia and Small Fiber Peripheral Polyneuropathy sounds not only painful, but a daunting trek to navigate through. I can tell you that while my Mayo experience was amazing, it was still an uphill battle to recover and maintain a healthy sobriety and normal way of living with what I still know to be "bouts of chronic pain". The positive spin to this story is I now know "roughly" what the cause is and how to handle the situation properly without medication thanks to Mayo's After Care for Chronic Pain Patients.

My first tool that I want to share and recognize, is they have you establish a mantra. Something that you truly believe in your heart that makes you feel better and motivates you in taking the daily steps that you need to induce that positive change. Mine was very simple and I will explain it. My daughter and I have always enjoyed putting on makeup, learning new techniques, keeping up with trends and looking our best despite what the day has in store for us, so every morning I got up, I took a shower, I did my hair and I put on makeup....even if I had a sleepless night (what I called, "being a sheet ninja" and cover kicking all night) or if I had tapered down a dose the day before and felt awful. My mantra was, "If I look good I feel good, If I feel good I do good, If I do good I am successful and I want to be successful!"

While that particular saying may not work for everyone, it did work for me, and I know I always felt a little better when I was fresh out of the shower and ready to start my day even if I was in some sort of pain. I am no longer on any sort of pain medicine and only take over the counter pain relievers for headaches and minor aches and pains as needed. I have informed all of my regular physicians of my past with pain medicine so that should I ever need anything major, they are sure to reference my medical record and handle it in a very sensitive and appropriate manner.

As far as the pain itself, it significantly decreased after stopping the opioids. The scar tissue is still there, but exercise and stretching helps tremendously as it loosens up the areas that need it and increases the muscles that need to be tougher to counteract the weakness. We (both myself as well as my GI doctors) found that due to multiple surgeries, my upper abdomen has a high susceptibility to trapped gas and air which can cause intense pain that does not feel like gas at all. It feels like the pain cuts me in half and I am going to die if I am being completely honest. The good thing is I can handle this pain now with antacids, specific yoga stretches and a little bit of focused time.

I really hope that both of your appointments go well and look forward to hearing about them. Besides the medication,is there something in either of your daily routines that you find even remotely successful in taking your mind off of the pain that you experience?

Jump to this post

@amandaburnett Many, many thanks for sharing your personal experience at Mayo's PRC. First off, congratulations on successfully completing the program and continuing after care. You won! 💪🏼👍🏻
I've had a lot of contemplation time and I'm pretty sure I have a handle on the program and what will be expected of me. I'm all in. The after care, once I step out the door is on me and I realize that. I like the mantra. Funny, you say yours was guided by your daughter and makeup. I love that! I do believe hydrocodone exacerbates my pain but, need it proved to me. My pain is daily, random and unpredictable. I can induce pain myself by over doing and I also have random pain attacks/flares. I wake in pain and go to bed in pain. I also believe Central Pain Sensitization has affected me. I feel like a big 'ole mixed bag of problems but, I know I'm not Mayos first rodeo. I have slowly, successfully progressed since last year and I work hard daily on my mind and body as best I can. I've been on permanent disability for 3 years, from chronic/intractable migraine. I also have eye issues and then crept in my Polyneuropathy. I cant drive more than 5 miles comfortably, on a good day, so I'm pretty much stuck as my husband works, my daughter's away at college and my son is grown and on his own. My days are tough and lonely. Even though it's been 3 years of being disabled, I'm still wired mentally to be a go getter but, health holds me back and friends and family only have so much time and availability to hang with me. The reason I tell you this is because I've been thinking of my mantra. I would steal yours (and have actually gone through phases of doing what you do) but, the days I go through the motions of styling my hair and makeup then just sit around the house with noone to talk to or any place to go, it almost hurts worse. Anyhow, sorry for getting into it that much. I know I need Mayo's help to see my way through and my fingers are crossed tightly that Covid allows me there in October. Again, my sincere appreciation for sharing your story. I wish you the very best in your continuing up hill journey. Take care,
Rachel

REPLY
@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

Jump to this post

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.

REPLY
@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.

Jump to this post

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. 🙏🏼

REPLY
@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!!

Jump to this post

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.

REPLY

@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!

REPLY

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.

REPLY

@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.

REPLY
Please sign in or register to post a reply.