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

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.

Hello Coder,
I was diagnosed with ACNES 1/21 after carnett test. First trigger point helped about a week until 4th trigger point zero relief. Found Dr Thomas Gillespie, surgeon at St Joseph's Med Center Phoenix who on 9/2/21 performed a Robotic Laparoscopic procedure cutting my T8, T9 and T10 abdominal nerves. Went home that afternoon CURED. Any change in muscle tone is insignificant. Others on this site have been cured by Dr Gillespie. Amazingly there is no down time. If you need more info I'd be happy to discuss.

Chronic nausea, right upper quadrant pain. I wake up every and I mean every single night of my life for 30 months now with debilitating pain and nausea. My sinuses clog, I have developed chronic constipation and have seen every Doctor concerning these issues. I have had over 25 ct scans, head, belly, back, chest, liver, 6 MRI's, multiple ER visits, Allergists, ENT's, Cardio, Gastro's, Internists, Psychiatrists, Acupuncture, PT, Orthopedic, Neurologists, Neurosurgeons, Holistic Practice , Hypnosis and I can't take it anymore. Mine started with a fall striking my side and my ear. I suffered a Detached Retina from the fall and my nausea, started when i awakened from the Surgery. It has gotten worse along with other issues. Chronic Constipation, stomach pain and
flu like symptoms daily. My hands now swell and I hurt all over most of the time. I am interested in the Mast Cell
Test, because I do have allergies. Other than that, according to the Doctors I am healthy. I feel horrible all the time for the Doctors to tell me there is nothing wrong. I know my body and I hate being sick and in pain. The nausea is the worst. I have never smoked or drank, I do not take meds other than Tylenol and Advil. I have a missing enzyme in my Liver that does not work on meds. I react totally differently when taking most meds. We are heartbroken and I can't enjoy one day without nausea and pain waking me every night between one and 2 a.m. and I walk the floor
holding my side and nauseated. I can't vomit, due to the Nissen Wrap done 20 years ago for Acid Reflux. I am
desperate for help. Please any information and where to go for help. No one listens. I am a Retired State
Employee and Watercolorist. Can't take the nausea anymore due to this awful state of Pain. I have been
married 54 years and happy, but it is taking it's toll on my entire life. My Nausea lasts at least 16 to 18 hours,
I sleep about 4 hours and I am up the rest of the night and my organs feel dead inside. I tried to get into Mayo and the appointments are so far out. I don't have that long to wait. I would like to feel better for at least a year or two before I die. I am 74 and suffering now since 71. It is heartbreaking when your Doctor will not believe you. I sure don't ask for pills, I just want help and a diagnosis. I can live with a diagnosis and hope. I love helping people and I am a generous person, now I need help and can't get it. It is funny how you are abandoned when your friends look at you and wonder, is it Mental. No it is not, but the pain and nausea are real. I would not wish this on anyone. I just need someone to listen to me and help me. My cognitive skills and memory
have not suffered, just my stomach and daily functions. I am strong and will not give up, but I admit it is so hard. Please help if you can.

@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.

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.

I too have stomach pain but not as severe as yours. I have autoimmune that has been diagnosed as RA however the variety of meds I’ve tried have either had unwanted side effects or helped minimally. I have neuropathy I have chronic kidney disease low iron. My joint swelling is minimal, but stomach is still a problem. I changed my diet went Keto then vegan , lost 50+ pounds but also lost muscle which at my old age has been a negative. So I have modified my diet. I find if I fast and let my stomach rest I start feeling good, but I am reluctant to go for extended fast due too my age and comorbidities I deal with. The last biologic I was on helped my autoimmune issues fairly well including stomach pain, for a year then my stomach developed the severe pain again. So I am not sure if next step. I am not very active due to all these health issues.
I hope you find a resolution and restore your health.