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'm VERY sorry for your experiences! My husband has gastroparesis and has also developed depression, anxiety and fibromyalgia. He experiences many of your symptoms. He, too, has difficulty at times, trying to face a life in which he has so few truly enjoyable days (and our definition of "enjoyable" has immensely changed). I don't have any answers, but pray you will be able to hold onto faith and hope and that you have family to support you! My husband was prescribed a pain patch instead of taking oral pain meds. The patch seems to provide better round the clock pain control without the highs and lows associated with taking pills. Also, there is less chance of abuse with a patch than will pills. Have you considered a mask and gloves during this pandemic to facilitate your travel to the Mayo? Everyone's comfort level with COVID-19 is different. If you feel you could safely travel, I highly recommend the Mayo. We got nowhere with my husbands problems until we obtained Mayo care. They are amazing!

REPLY

Yes, it’s not a good quality of life. I’m hoping the test I’m having Wednesday will find the cause. We have narrowed it down by process of elimination. I am not concerned about catching Covid, it just makes things more difficult. The mask makes me sweat which makes my stomach hurt worse. I don’t think gloves really do anything anyway. As long as you keep hands clean and not touch your face your better off without Gloves. Once we get the results from the vascular Dr we’ll see if we need to go to Mayo. This is pretty much the last thing it can be.

REPLY
@amandaburnett

Oh wow @trip17, Well let me share the link to our MALS discussion with you. It is a very extensive conversation, but there is a lot of good information here. https://connect.mayoclinic.org/discussion/median-arcuate-ligament-syndrome-mals/

Jump to this post

Thanks. I'm praying so hard that this is what it is. We are out of options and I cannot continue to live like this.

REPLY

@trip17 – Good luck with your appointment tomorrow!
As I read your last post, it struck me that I used the same words as you do – I can’t continue to live like this- when MALS diagnosis was made and I decided to go through surgery.

REPLY
@astaingegerdm

@trip17 – Good luck with your appointment tomorrow!
As I read your last post, it struck me that I used the same words as you do – I can’t continue to live like this- when MALS diagnosis was made and I decided to go through surgery.

Jump to this post

How bad was the surgery?

REPLY

@trip17 – The surgery was okay. Laparoscopic, pain not bad. After surgery I had spasms of the diaphragm because the ligament was attached there. However, with gabapentin this nerve pain was very tolerable. No regrets!

REPLY

How long was recovery?

REPLY

@trip17 – the severe pain was gone immediately. The post-op pain lasted about 2 wee

REPLY

HI . My wife had similar pains . But no bledder removal. Once all tests were OK – Our doctor suspected that it can be something connected with her nerves. We had a meeting with a nerve specialist . He agreed with our doctor and recommended to start to take CLONEX . It was a real miracle after a few hours the pain diasppered. She took a few days a strong dose of 2 mg and then 3 times a day a 1/4 of 0/5 mg.

REPLY

Thank You! I will look into that! We are down to it being either a ligament that is squeezing an artery or a nerve issue. I took a test for the Ligament artery (called MALS) a couple days ago but have not heard anything. If that's not it, it has to be a nerve, but I'm heading to UT Southwestern Diagnostic to let them try to figure it out. I want to go to Mayo in Jacksonville, but don't think my insurance will cover it.

REPLY
@astaingegerdm

@trip17 – the severe pain was gone immediately. The post-op pain lasted about 2 wee

Jump to this post

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.

REPLY

@trip17 – I know that feeling that every day is bad.
Laparoscopic surgery is still surgery where they poke around inside- before going home one has to be able to eat, drink and use the bathroom. Some people have nausea- I did after my gallbladder and I couldn’t eat so they kept me another day.
Think positive for now!

REPLY
Please sign in or register to post a reply.