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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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mutter3 | @mutter3 | Sep 8, 2020

If I was seeking treatment at Mayo,where I am an established patient, Is go to Rochester. Easy flight from Texas

REPLY
grammajackie | @grammajackie | Sep 9, 2020
In reply to @trip17 "Thanks. Have already started the process. Having a Splanchnic Nerve block injection this week or next..." + (show)
@trip17

Thanks. Have already started the process. Having a Splanchnic Nerve block injection this week or next to help relieve the pain.

Jump to this post

My grandson had a diagnostic splanchnic nerve block, but the the relief from pain only lasted 2 weeks. He then had a radiofrequency ablation, which also only relieved pain for less than a month. Please look into Mast Cell Activation Syndrome. It was the answer for my grandson.

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1 reply
trip17 | @trip17 | Sep 9, 2020

Thank you! For some reason, I've been feeling a little better lately. I have done a few things like acupuncture, special drinks, chiropractor. Still hurts but for the first time in months I've actually had long periods during the day where I feel "normal." I had no idea how sick I was until I started feeling a little better. The Dr. said the shot should work a month to 3 months, which is all I need right now. After that I can go to Mayo and let them figure it out. I'll check into MCAS. Glad your grandson is feeling better.

REPLY
coderhomer | @coderhomer | Sep 10, 2020

I'm going to jump in on this thread. My gallbladder was removed in 2014 after I had been having right upper ab pain for several years. All tests were normal except for a slightly abnormal gallbladder ejection fraction. The pain continued even after the GB was out. Started seeing a pain specialist after all GI testing came back normal. Have been on Tramadol and Gabapentin for pain which is in my right upper abdominal area. Surgeon thought it could be scar tissue from the GB surgery so he went in and took down scar tissue. Still no relief. This pain has totally controlled what I do. Some days are worse than others. It's been close to 10 years since I started my journey to find out what was causing this. I live in Northern MN and visited the University of MN to see Dr. Freeman the Sphincter of Oddi expert. He ruled out SOD. So it was back to the pain specialist. At one visit he suggested I see an interventional pain provider at a local pain center where I had nerve blocks. These did not relieve the pain. It is an aching sometimes sharp pain that can come on if I overly exert myself, other times it comes on for no reason and can last all day. The pain meds take the edge off. I even went as far as seeing a psychologist to learn mindfulness and how to control the pain by creating new pathways to the brain center that controls pain signals. It is very relaxing as I do carry a lot of stress in that area when the pain is bad.
The pain doc then said let's do a trigger point injection using bubivacaine and a small amount of Kenalog. I was able to put my finger on the exact spot where the pain was in the right upper abdomen right under my ribcage near the midline. He then had me do the Carnetts test by lifting my legs to see if the pain stayed the same or changed. It didn't change. He said he believed I had ACNES or anterior cutaneous nerve entrapment syndrome. The trigger point injection helped relieve the pain and though it only lasts a couple weeks it was such a relief. I do go back every few months for an injection. While it's not a cure it does help. We talked to the surgeon and asked about a neurectomy to cut the nerve causing the pain, however he wouldn't perform one in that area as you can lose all muscle tone in that area. So after all these years I finally have an answer as to what is causing the pain and while I'm learning to live with it and control it, it's still something I won't give up on. I do a lot of reading and research to see if anything new is being found through case studies which there is but unfortunately it's happening outside the US.
Through all of this I've had a good support group in my family and friends and most importantly with my Lord and Savior, Jesus Christ. When others don't understand and get frustrated right along with me, I know that He knows and is always in control no matter what.
I wish you well in your journey for an answer. Don't give up. It took me years and many unneeded tests and visits as ACNES is so often overlooked as a cause of unexplained abdominal pain. So your answer is coming. I believe that. Take care.

REPLY
2 replies
cldmeyers | @cldmeyers | Sep 10, 2020

I went through a year of nausea and diarrhea til I found that my memory med (Donepezil generic) and the patch were causing my condition to get worse. I'm now on Prevagen and memory and other factors have all settled down. Just a share.

REPLY
Amanda Burnett | @amandaa | Sep 10, 2020
In reply to @grammajackie "My grandson had a diagnostic splanchnic nerve block, but the the relief from pain only lasted..." + (show)
@grammajackie

My grandson had a diagnostic splanchnic nerve block, but the the relief from pain only lasted 2 weeks. He then had a radiofrequency ablation, which also only relieved pain for less than a month. Please look into Mast Cell Activation Syndrome. It was the answer for my grandson.

Jump to this post

@grammajackie I am sure that with the long and challenging road to finding a diagnosis for your grandson, you want to to share it widely and hope to help anyone who may have similar symptoms! And thank you for explaining what Mast Cell Activation Syndrome is in your last post to the discussion. I thought you might be interested in joining this group to share your grandson's story here and connect with other people who have had similar issues.

Mast Cell Activation - https://connect.mayoclinic.org/discussion/mast-cell-activation/

REPLY
Laura48(Laura Walters) | @david33 | Sep 10, 2020
In reply to @coderhomer "I'm going to jump in on this thread. My gallbladder was removed in 2014 after I..." + (show)
@coderhomer

I'm going to jump in on this thread. My gallbladder was removed in 2014 after I had been having right upper ab pain for several years. All tests were normal except for a slightly abnormal gallbladder ejection fraction. The pain continued even after the GB was out. Started seeing a pain specialist after all GI testing came back normal. Have been on Tramadol and Gabapentin for pain which is in my right upper abdominal area. Surgeon thought it could be scar tissue from the GB surgery so he went in and took down scar tissue. Still no relief. This pain has totally controlled what I do. Some days are worse than others. It's been close to 10 years since I started my journey to find out what was causing this. I live in Northern MN and visited the University of MN to see Dr. Freeman the Sphincter of Oddi expert. He ruled out SOD. So it was back to the pain specialist. At one visit he suggested I see an interventional pain provider at a local pain center where I had nerve blocks. These did not relieve the pain. It is an aching sometimes sharp pain that can come on if I overly exert myself, other times it comes on for no reason and can last all day. The pain meds take the edge off. I even went as far as seeing a psychologist to learn mindfulness and how to control the pain by creating new pathways to the brain center that controls pain signals. It is very relaxing as I do carry a lot of stress in that area when the pain is bad.
The pain doc then said let's do a trigger point injection using bubivacaine and a small amount of Kenalog. I was able to put my finger on the exact spot where the pain was in the right upper abdomen right under my ribcage near the midline. He then had me do the Carnetts test by lifting my legs to see if the pain stayed the same or changed. It didn't change. He said he believed I had ACNES or anterior cutaneous nerve entrapment syndrome. The trigger point injection helped relieve the pain and though it only lasts a couple weeks it was such a relief. I do go back every few months for an injection. While it's not a cure it does help. We talked to the surgeon and asked about a neurectomy to cut the nerve causing the pain, however he wouldn't perform one in that area as you can lose all muscle tone in that area. So after all these years I finally have an answer as to what is causing the pain and while I'm learning to live with it and control it, it's still something I won't give up on. I do a lot of reading and research to see if anything new is being found through case studies which there is but unfortunately it's happening outside the US.
Through all of this I've had a good support group in my family and friends and most importantly with my Lord and Savior, Jesus Christ. When others don't understand and get frustrated right along with me, I know that He knows and is always in control no matter what.
I wish you well in your journey for an answer. Don't give up. It took me years and many unneeded tests and visits as ACNES is so often overlooked as a cause of unexplained abdominal pain. So your answer is coming. I believe that. Take care.

Jump to this post

coderhomer @coderhomer
I want to thank you for your post, I had my gallbladder taken out in 2011, and had multiple surgeries in that area.
After reading your post it gives peace of mind and hope that one day these doctors will find a way to relieve this pain, it's getting hard for me to eat without having pain, and doing things I used to love doing has to wait due to pain at bending at the waste. Right now my doctor is calling it neuropathy and chronic issues, and giving me medicine to take.

REPLY
Laura48(Laura Walters) | @david33 | Sep 10, 2020

Hello trip17 @trip17
My name is Laura and I have the same issue and the doctors ran a lot of text, and they made excuses to where I'm now taking vitamin B-12 and D3 to bring those up and they are hoping the D3 will help me with my energy level, they also proscribed gabapentin to relieve pain, my gallbladder was removed in 2011 with more surgeries in the same area after that. The doctor had me on Tramadol but I became immune to it so they had to stop prescribing it to me, but raised my gabapentin to 300 mg and after 2 weeks it will go to 600 mg's.

REPLY
trip17 | @trip17 | Sep 11, 2020

Thanks. I was on Gabapentin but don't think it was doing much plus I gained 60lbs while on it so I stopped 2 months ago. I lost 20 of those pounds but cannot go on it again for fear of weight gain. They tried Trokendi, but it made me sicker and (IN MY OPINION) caused neuropathy in my feet and I didn't need that on top of stomach issues. Having a Celiac Plexus Nerve Pain Block shot next week.

REPLY
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