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

Hi
I had the same thing. In and out of different doctors and all my tests were negative. Went to see a natural Patric and she figured out and helped me by telling me remedies. I started taking licorice root for a month 3 times a day. Please follow instructions if you take. Then I was weaned off the medication my doctor gave me. I went to see a gastro and he said when there is negative results it’s dyspepsia and you need to watch what you eat. I’m feeling so much better with no flare ups and watching what I eat. I do cheat once in a while but that’s ok.
I hope you feel better and this information helps you.
Robin.

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Have you tried aloe vera gel, a tablespoon several times a day. Please ask your doctor. Can be purchased at Puritan pride.

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My md started taking my meds out one at a time until I started feeling better after he took Donepezil out. You might try that.

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I had a Splanchnic Nerve block procedure last week because I wanted some relief so I could travel next week to a very important event. The procedure did absolutely nothing to ease my daily pain and nausea. In addition, my feet Neuropathy that I get Sanexas treatment for twice a week was working until last week. Now the pain in my feet is back to where is was originally. I’ve exhausted all specialists and tests except a Rheumatologist. I have begun to have all my test results and medical records sent to the Mayo Clinic in Florida. I will then have a video conference with the Doctor to decide how to proceed. It’s a living nightmare that doesn’t seem to have an end to it so I’m counting on the Mayo to come through for me. I cannot live my life this way.

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@trip17

I had a Splanchnic Nerve block procedure last week because I wanted some relief so I could travel next week to a very important event. The procedure did absolutely nothing to ease my daily pain and nausea. In addition, my feet Neuropathy that I get Sanexas treatment for twice a week was working until last week. Now the pain in my feet is back to where is was originally. I’ve exhausted all specialists and tests except a Rheumatologist. I have begun to have all my test results and medical records sent to the Mayo Clinic in Florida. I will then have a video conference with the Doctor to decide how to proceed. It’s a living nightmare that doesn’t seem to have an end to it so I’m counting on the Mayo to come through for me. I cannot live my life this way.

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@trip17 I don't know if you have heard of Kratom, but I use it all of the time for nerve pain, and it helps tremendously. It is not FDA approved in all states, and the moderators on Connect would rather that I post about it privately. If you would like to know more about this wonderful plant, please do private message me at LoriRenee1. I will try to help you, as it helps me tremendously with severe nerve pain. Lori Renee

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@lorirenee1

@trip17 I don't know if you have heard of Kratom, but I use it all of the time for nerve pain, and it helps tremendously. It is not FDA approved in all states, and the moderators on Connect would rather that I post about it privately. If you would like to know more about this wonderful plant, please do private message me at LoriRenee1. I will try to help you, as it helps me tremendously with severe nerve pain. Lori Renee

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@lorirenee1, you can post about kratom. No need to private message. Thank you for pointing out that it is not FDA approved.

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@colleenyoung

@lorirenee1, you can post about kratom. No need to private message. Thank you for pointing out that it is not FDA approved.

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@colleenyoung Aww, Colleen, thanks so much for letting me post again about Kratom. I swear, it is truly the only thing I know of that rids me of nerve pain for about 3-4 hours at a time. I will also always mention that it is not FDA approved. Poor folks on this site really need help, and Kratom helps. Thanks again, Lori

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@trip17

I had a Splanchnic Nerve block procedure last week because I wanted some relief so I could travel next week to a very important event. The procedure did absolutely nothing to ease my daily pain and nausea. In addition, my feet Neuropathy that I get Sanexas treatment for twice a week was working until last week. Now the pain in my feet is back to where is was originally. I’ve exhausted all specialists and tests except a Rheumatologist. I have begun to have all my test results and medical records sent to the Mayo Clinic in Florida. I will then have a video conference with the Doctor to decide how to proceed. It’s a living nightmare that doesn’t seem to have an end to it so I’m counting on the Mayo to come through for me. I cannot live my life this way.

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If it's stomach pain and nausea, could be something you are eating. I have tried before, I think, to tell you to check into Mast Cell Activation Syndrome. A mediator release test (MRT) will tell you to which foods you have a sensitivity and are causing your mast cells to run amok, which can cause all kinds of pain issues. The test worked for my grandson who suffered for 2.5 years.

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@lorirenee1

@colleenyoung Aww, Colleen, thanks so much for letting me post again about Kratom. I swear, it is truly the only thing I know of that rids me of nerve pain for about 3-4 hours at a time. I will also always mention that it is not FDA approved. Poor folks on this site really need help, and Kratom helps. Thanks again, Lori

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Where can a person purchase Kratom? I have anterior cutaneous nerve entrapment syndrome. Wonder if it would help?

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@trip17

I had a Splanchnic Nerve block procedure last week because I wanted some relief so I could travel next week to a very important event. The procedure did absolutely nothing to ease my daily pain and nausea. In addition, my feet Neuropathy that I get Sanexas treatment for twice a week was working until last week. Now the pain in my feet is back to where is was originally. I’ve exhausted all specialists and tests except a Rheumatologist. I have begun to have all my test results and medical records sent to the Mayo Clinic in Florida. I will then have a video conference with the Doctor to decide how to proceed. It’s a living nightmare that doesn’t seem to have an end to it so I’m counting on the Mayo to come through for me. I cannot live my life this way.

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@trip17 I totally feel your pain, we are both having a similar problem. Sounds like you have had pain since football but could manage it and live life. I am 51 and have suffered from daily tension headaches and mild to moderate gut ache for the last 17 years, after many many tests I only worked on it occasionally for something new but my scripts and therapies allowed me to live mostly normally. March of 2018 my gut issue started to slowly get worse, that nortriptyline wasn't doing it anymore. Since then I have gone down hill every month, as you said I could Live with the old pains but not this, its not living.
My gut pain started in the same area it had been for years which was above navel up to under xiphoid, about 6 inches wide or so down the middle. Then in June of 2019 it added all the way down to lower pelvis. The pain is always there 24/7, just a constant gut ache. I have had all of the tests, labs, pills, gosh knows how many dr appts and five different guided injections, etc etc.

Since January my pain has been 7.5 or higher all of the time, I could handle headaches because I could lower the level at some point, and now in last few months its 8.0 or higher. Depression has set in now for awhile because other than working from home I dont want to do much at all. I have forced myself to do a few things with my high school aged kids but don't look forward to anything. Its exhausting to live and keep researching, calling, going to appts. The Tough thing about our current medical system and I was working hard on this before Covid is that most all doctors decide quickly if they can help you or not, if it doesn't fit in their box they aren't really interested. In general I haven't had doctors give me recommendations to see others. I actually was so depressed and in pain in late July I showed up at our top rated hospital's ER dept to get pain relief and maybe figure out as a team what was wrong. They did admit me but wouldnt give me anything strong to help with level 8 constant pain. I haven't had a good nights rest in a year. They took blood, had a few doctors come ask some questions and requested a consult from pain mgt. The doctor was part of the hospital group chain of pain mgt doctor I had seen outpatient at another location. I thought maybe the more senior doctor would have an idea, they tried a different block down low of the same nerve group and didnt end up doing a thing. I spent 3 days there for nothing. I will add that in the last 4-6 months I now too have numbness or tingling and or pain in my hands, feet, occasionally leg or arm. Like you said just what you needed, another problem.

After seeing a new gi doctor last month I had a colonoscopy since it had been five years, all good there. I started discussing ab wall, nerves and muscles and Mayo Clinic, she agreed and said you need to go. Its been an odd process to see if they are going to take my case or point me to one of their departments, I'm still waiting. I am asking the original pain mgt doctor who is in the same group I mentioned to look at some other options since I am just so miserable, its now getting worse each week. I live in St Louis and we have plenty of medical care but trying to find another pain mgt clinc that has some focus on ab pain is hard to find. I believe from my research I have abdominal myofascial pain syndrome that now has many trigger points. I just don't want to go to someone who is just in it for the money and procedures and not the cause. The hospital I go to isn't pushing that but not really focusing enough on branch out from your usual routine. My wife of 25 years and 34 together is a trooper but i's hard on the whole family, I don't have much patience and can be very critical now to live with. I know what I am doing but it's a response to being in pain every minute. Laying down is actually worse pain for me and standing up is the best position which is still bad pain. I don't really notice a big difference after eating and only some brief nausea. Up under my xiphoid and rib area feels like a lot of pressure pushing, pushing out pain! The lower I go such as below the navel gets sharper.

We have a similar problem, abdominal pain that can't be classified/ID and won't go away. I think our mental state is very similar, I am not living right now and can't keep living this way. I lean more towards keeping fighting for my family's sake but I am not living or enjoying life. I'm lucky I have one friend I have known for 30 years who has life long pain and he can understand. If you end up needing someone to talk to I would be available, the mental side is now as bad as the physical side.

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@trip17

I had a Splanchnic Nerve block procedure last week because I wanted some relief so I could travel next week to a very important event. The procedure did absolutely nothing to ease my daily pain and nausea. In addition, my feet Neuropathy that I get Sanexas treatment for twice a week was working until last week. Now the pain in my feet is back to where is was originally. I’ve exhausted all specialists and tests except a Rheumatologist. I have begun to have all my test results and medical records sent to the Mayo Clinic in Florida. I will then have a video conference with the Doctor to decide how to proceed. It’s a living nightmare that doesn’t seem to have an end to it so I’m counting on the Mayo to come through for me. I cannot live my life this way.

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@trip17 Where do you stand with your pain issues and problem. Its been over the 8 business days for Mayo to get back to me so I guess I need to call them tomorrow. Gabapentin and Lorazepam not doing much for me, maybe sleeping a little more but add vape medical THC at night too. Trying to get into a new pain mgt doctor, have sent records to them. Will call them tomorrow too.

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Hello everyone. I have been scrolling down this thread, reading along excitedly and taking notes… and if this thread were a novel, it would be a cliffhanger! I am desperate to know if any progress has been made with the original poster’s condition.

My daughter is now 16 and over the last 5 years her health has been in steady decline. It started out slowly. Maybe just episodes every few weeks… then every couple of weeks … then every week…until now there is no time ever when she is feeling good. This last year has been the worst. We have had to let her be homeschooled (which has turned out to be *no-schooled*) because she is just too ill every day, all the time. Her chronic nausea and stomach pain is so debilitating; at times she is doubled over, cannot be touched, and sobbing her little heart out. We have had the cameras, the endoscopies, the blood tests, the ultrasounds, the MRIs… all clear. We are desperate. We feel so utterly helpless. We live in London (I have just found out there is a Mayo Clinic here!) – but we would travel home to the USA at an instant if Jacksonville is the place we need to be).

You all are all so knowledgeable and it is a comfort to me that there are still unexplored avenues and untapped resources to get out of this seeming dead-end and save my daughter.

I will comb whatever threads I can find here.

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