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

I guess everyone reacts differently. I actually had a roast beef sandwich about 2 hours after surgery with no issues. Just had a tough time standing up first couple of times. Once I was able to walk down the hallway, I went home next day.

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@trip17

Thanks. Should find out results of test Monday. I read where someone stayed in the hospital 3 or 4 days with this surgery. That seemed like a long time for laparoscopic surgery. When they took out my Gal Bladder I was supposed to go home same day, but had some complications during surgery so I stayed overnight, but not 3 days. It would be “extremely” rare for this to be my issue but I have all the symptoms. If negative it’s off to UT Southwestern Diagnostic Clinic or Mayo in Jacksonville. I have no good days anymore and it’s really wearing on me.

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Test was negative. so frustrating. I need something to help with pain management until they figure this out. Hydrocodone only works for about 4 hours and I refuse to take more than 2 a day. has to be something better,

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@trip17

Test was negative. so frustrating. I need something to help with pain management until they figure this out. Hydrocodone only works for about 4 hours and I refuse to take more than 2 a day. has to be something better,

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Hi @trip17 Check one more thing off your list and keep moving on. It is a frustrating process but, you have to stay the course. We can be happy and sad when a test is negative. Happy because we really don't want one more thing but, sad because the challenge continues. I'm sorry and understand your frustrations. Regarding hydrocodone…you are brave and strong by enduring pain and refusing to take more. I get that because its exactly how I began 3 years ago, taking hydrocodone. At this point for me I now take 4 per day every 3 hours or if things are better in my body, maybe 4-6 hours. It is a constant battle being in pain and not receiving ample relief. I added medical marijuana to help when hydro doesnt. It's a viscous cycle. I wish you well and hope you find your answers.
Rachel

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@trip17 – What other plans do the doctors have for you? Are you ruling out Mayo because of the pandemic? Is any of the centers close enough to drive to? I was lucky to be close enough to Jacksonville Mayo. Do you have specific pain management doctor for now?

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@rwinney

Hi @trip17 Check one more thing off your list and keep moving on. It is a frustrating process but, you have to stay the course. We can be happy and sad when a test is negative. Happy because we really don't want one more thing but, sad because the challenge continues. I'm sorry and understand your frustrations. Regarding hydrocodone…you are brave and strong by enduring pain and refusing to take more. I get that because its exactly how I began 3 years ago, taking hydrocodone. At this point for me I now take 4 per day every 3 hours or if things are better in my body, maybe 4-6 hours. It is a constant battle being in pain and not receiving ample relief. I added medical marijuana to help when hydro doesnt. It's a viscous cycle. I wish you well and hope you find your answers.
Rachel

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You nailed it. I'm actually more upset when it's negative now, but I understand what you are saying. I'm still just taking 2 hydro a day although I really need more, but can't do it. Take one around noon (although mornings are the worst part of my day. I barely made it to the office today). I take a half later in the afternoon and the other half before bed (for my neuropathy). The Vascular Dr decided to do one more test tomorrow. An ultrasound on the abdominal aorta. All the symptoms point to a problem with that, but nothing is showing up. This will be the last test before going to UT Southwestern or Mayo in FL. I wanted to try medical Marijuana but I don't qualify for it here in Texas. Asking the pain Dr who did my spine block implant, if he can do a nerve block shot so I can survive until we find out what's wrong. I cannot function normally anymore. It's just too hard and I'm s former football player who is used to dealing with pain. It's that bad. Praying for you and hope you get better soon.

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@astaingegerdm

@trip17 – What other plans do the doctors have for you? Are you ruling out Mayo because of the pandemic? Is any of the centers close enough to drive to? I was lucky to be close enough to Jacksonville Mayo. Do you have specific pain management doctor for now?

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Doing one more test tomorrow. Ultrasound on the Abdominal Aorta. They are trying to get me into UT Southwestern but I'm starting to think I may want to go to Mayo in FL instead. I don't mind flying there, just means I have no shot at attending a very important event in NJ on October 9. It's a once in a lifetime event. The drive to Jacksonville is 15 hours so not sure I could make it that long. Other than getting a referral and approval from my insurance, I have no idea how to even start the process of going to Mayo.

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@trip17 – You can go online to mayoclinic.org where they tell you how to make an appointment. They would also discuss financial issues.
You can still attend your event in NJ – depends on how and when the appointment is made and you have a say also.

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@trip17

You nailed it. I'm actually more upset when it's negative now, but I understand what you are saying. I'm still just taking 2 hydro a day although I really need more, but can't do it. Take one around noon (although mornings are the worst part of my day. I barely made it to the office today). I take a half later in the afternoon and the other half before bed (for my neuropathy). The Vascular Dr decided to do one more test tomorrow. An ultrasound on the abdominal aorta. All the symptoms point to a problem with that, but nothing is showing up. This will be the last test before going to UT Southwestern or Mayo in FL. I wanted to try medical Marijuana but I don't qualify for it here in Texas. Asking the pain Dr who did my spine block implant, if he can do a nerve block shot so I can survive until we find out what's wrong. I cannot function normally anymore. It's just too hard and I'm s former football player who is used to dealing with pain. It's that bad. Praying for you and hope you get better soon.

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@trip17Thank you. Ahhh what a mess, huh? I hear you. My husband will be having his knee replaced due to sports at 55yrs old. Doc wanted him to hold out and he has but cant anymore. He installs floors, too much pain. If MM is legal in Texas, your pain Drs should be able to certify you as being in chronic pain so you can get licensed. I sure hope your ultrasound shows something. Best of luck to you.
Rachel

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@trip17

Doing one more test tomorrow. Ultrasound on the Abdominal Aorta. They are trying to get me into UT Southwestern but I'm starting to think I may want to go to Mayo in FL instead. I don't mind flying there, just means I have no shot at attending a very important event in NJ on October 9. It's a once in a lifetime event. The drive to Jacksonville is 15 hours so not sure I could make it that long. Other than getting a referral and approval from my insurance, I have no idea how to even start the process of going to Mayo.

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Hi @trip17, and thank you @astaingegerdm for bringing that up. If you would like to make an appointment at Mayo Clinic Florida I have included a link here: http://mayocl.in/1mtmR63 You will first speak with a coordinator that will establish you as a patient with a clinic number and run your insurance to determine if you are in network and then they will transfer you to an agent who will ask symptom related questions to determine which department is appropriate for you to start in.

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Look into Mast Cell Activation Syndrome. A mediator release test MRT will indicate which foods you are "sensitive" to, not allergic to. It is an expensive blood test through Oxford Clinical Laboratory in Palm Beach, Florida. Watch a video done by Ilana Jacqueline on Mast Cell Activation. This was the answer for my grandson who suffered for 2+ years with nausea, vomiting and severe abdominal pain every morning. Had every test in the book, tried many different medications, to no avail. This test found he was sensitive to many different foods and chemicals found in meds and food, One of the main ones was aspartame, the artificial sweetener found in diet beverages and foods. He is diabetic and had been eating/drinking diet stuff since he was a little kid (he is now 20). So, after only 2 days of eliminating aspartame, his stomach issues disappeared. We also eliminated the other ones, like corn, spinach, bananas, oregano, MSG, onions. He is a totally different person now that he feels pretty normal. Mast cells are supposed to be good guys, but sometimes they run amuk. Hope this helps.

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@amandaburnett

Hi @trip17, and thank you @astaingegerdm for bringing that up. If you would like to make an appointment at Mayo Clinic Florida I have included a link here: http://mayocl.in/1mtmR63 You will first speak with a coordinator that will establish you as a patient with a clinic number and run your insurance to determine if you are in network and then they will transfer you to an agent who will ask symptom related questions to determine which department is appropriate for you to start in.

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

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@trip17 – It’s good news that you will get help with the pain and be able to function. Good luck!

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