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

Hi @rwinney and @trip17, thank you so much for sharing your journey with us so far. @rwinney, Your diagnoses of Migraine, Cervical Spondylosis, Occipital Neuralgia and Small Fiber Peripheral Polyneuropathy sounds not only painful, but a daunting trek to navigate through. I can tell you that while my Mayo experience was amazing, it was still an uphill battle to recover and maintain a healthy sobriety and normal way of living with what I still know to be "bouts of chronic pain". The positive spin to this story is I now know "roughly" what the cause is and how to handle the situation properly without medication thanks to Mayo's After Care for Chronic Pain Patients.

My first tool that I want to share and recognize, is they have you establish a mantra. Something that you truly believe in your heart that makes you feel better and motivates you in taking the daily steps that you need to induce that positive change. Mine was very simple and I will explain it. My daughter and I have always enjoyed putting on makeup, learning new techniques, keeping up with trends and looking our best despite what the day has in store for us, so every morning I got up, I took a shower, I did my hair and I put on makeup....even if I had a sleepless night (what I called, "being a sheet ninja" and cover kicking all night) or if I had tapered down a dose the day before and felt awful. My mantra was, "If I look good I feel good, If I feel good I do good, If I do good I am successful and I want to be successful!"

While that particular saying may not work for everyone, it did work for me, and I know I always felt a little better when I was fresh out of the shower and ready to start my day even if I was in some sort of pain. I am no longer on any sort of pain medicine and only take over the counter pain relievers for headaches and minor aches and pains as needed. I have informed all of my regular physicians of my past with pain medicine so that should I ever need anything major, they are sure to reference my medical record and handle it in a very sensitive and appropriate manner.

As far as the pain itself, it significantly decreased after stopping the opioids. The scar tissue is still there, but exercise and stretching helps tremendously as it loosens up the areas that need it and increases the muscles that need to be tougher to counteract the weakness. We (both myself as well as my GI doctors) found that due to multiple surgeries, my upper abdomen has a high susceptibility to trapped gas and air which can cause intense pain that does not feel like gas at all. It feels like the pain cuts me in half and I am going to die if I am being completely honest. The good thing is I can handle this pain now with antacids, specific yoga stretches and a little bit of focused time.

I really hope that both of your appointments go well and look forward to hearing about them. Besides the medication,is there something in either of your daily routines that you find even remotely successful in taking your mind off of the pain that you experience?

@trip17 - I’m my case they removed the ligament that sat on the artery. Felt better at once. Pain returned and they placed a stent in the still deformed artery to keep it open. So far so good! Felt normal at once again.

I also am in Texas and travelled to Rochester two weeks ago. No problem. The doctors at UT Southwestern are great. Many of them trained at Mayo. Good luck!!

@amandaburnett Many, many thanks for sharing your personal experience at Mayo's PRC. First off, congratulations on successfully completing the program and continuing after care. You won! 💪🏼👍🏻
I've had a lot of contemplation time and I'm pretty sure I have a handle on the program and what will be expected of me. I'm all in. The after care, once I step out the door is on me and I realize that. I like the mantra. Funny, you say yours was guided by your daughter and makeup. I love that! I do believe hydrocodone exacerbates my pain but, need it proved to me. My pain is daily, random and unpredictable. I can induce pain myself by over doing and I also have random pain attacks/flares. I wake in pain and go to bed in pain. I also believe Central Pain Sensitization has affected me. I feel like a big 'ole mixed bag of problems but, I know I'm not Mayos first rodeo. I have slowly, successfully progressed since last year and I work hard daily on my mind and body as best I can. I've been on permanent disability for 3 years, from chronic/intractable migraine. I also have eye issues and then crept in my Polyneuropathy. I cant drive more than 5 miles comfortably, on a good day, so I'm pretty much stuck as my husband works, my daughter's away at college and my son is grown and on his own. My days are tough and lonely. Even though it's been 3 years of being disabled, I'm still wired mentally to be a go getter but, health holds me back and friends and family only have so much time and availability to hang with me. The reason I tell you this is because I've been thinking of my mantra. I would steal yours (and have actually gone through phases of doing what you do) but, the days I go through the motions of styling my hair and makeup then just sit around the house with noone to talk to or any place to go, it almost hurts worse. Anyhow, sorry for getting into it that much. I know I need Mayo's help to see my way through and my fingers are crossed tightly that Covid allows me there in October. Again, my sincere appreciation for sharing your story. I wish you the very best in your continuing up hill journey. Take care,
Rachel

Hello Teresa. They ruled out sphincter of Oddi dysfunction. My Gallbladder surgery was laparoscopic but it took longer than anticipated due to the stone being stuck just outside the gallbladder. They had to get the stone back in the gallbladder before they could take it out. The Gastroenterologists have said they’ve done all they can do. Will have tests this week (hopefully) by the vascular surgeon to see if clogged veins are causing my stomach issues. I’m also seeing the Neurologist to get the blood test results for the neuropathy that came out of nowhere a couple months ago. This is a big week coming up for me to get answers finally.

That sounds like what I have. I guess we’ll know as soon as I get in to see the vascular surgeon. Hopefully this week. 🙏🏼

I’m going to see the vascular surgeon before going to UTSW as I can get in to see him faster. If it’s vascular then I won’t have to go to UTSW, but setting it up just in case. What I don’t understand is where this Neuropathy came from a couple months ago. It just came out of nowhere, but I’m more worried about my stomach. It’s been too long, too many tests and too many days of not feeling well.

@trip17 I fully understand that you are most worried about your abdominal pain now- one thing at a time!
I had my severe abdominal pain for many years and I had a variety of GI problem -so I thought it was all related somehow. There would be times at work when I just wanted to scream. In retrospect, it was always after meals
I hope they find that you have a vascular problem that is fixable.
The neuropathy is a mystery, since you don't have diabetes. Did you have nerve conduction tests? What about lower extremity blood flow testing?
With neuropathy in the feet one has to worry about injuries that one doesn't necessarily feel but can cause infection.
Good luck this week!

The Doctor is scheduling the Vascular Doctor today so I hope to see him very soon. I have no idea where the neuropathy came from. I was put on Trokendi for about a month and it made my stomach worse, but as I came off it, I had horrible withdrawal symptoms that lasted 22 days, first seven were hell. The neuropathy started as I came off the Trokendi. Makes no sense.

@trip17 I looked up side effects of Trokendi and they include tingling of arms and legs and decreased skin sensation. It can continue after drug is stopped, but if you still have it you would have the doctors check it out.