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

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@rwinney

@amandaburnett and @trip17 I'm sorry for both of your pain journeys. Pain can be very complex which is why I took interest in your conversation regarding OIH (opiod induced hyperalgesia). I've been on 5mg of hydrocodone/acetaminophen 3 years for Migraine, Cervical Spondylosis, Occipital Neuralgia and Small Fiber Peripheral Polyneuropathy. As my pain is not always controlled well enough by 5mg, and I dont want to increase the opiod mg, I use medical marijuana to pick up the slack. I'm frustrated because in a rare instance when I'm feeling like I dont need a pain pill, I cant seem to go too long without feeling flu like symptoms of body aches, sweats, headaches. The problem is, as much as I want off opiods, they help my neuropathy sensations and pains. I feel it's a catch 22 because, could they be causing additional pain while trying to help? Great question. I will be going to Mayo Jacksonville this October and am fully prepared for them to wean me off safely. I know this is the only way to get to the bottom of whether I experience OIH. I do fear, however, how my pain will be effectively handled. I know Mayo will do everything in their power to provide me a new way. I'm game and hope they dispell all of my thoughts and concerns going forward. I fear my pain will need opiods for the rest of my life and hope they prove me wrong. Thanks for bringing up this topic Amanda. It was good to read your experience with Mayo and I am interested in your after Mayo life. Did all your pain disappear? Was it only caused by phantom gallstone
or did you have other painful conditions? What do you take for pain now and how easy has it been to not use opiods again? Chris, I will be interested in your outcome if you attempt to wean off hydrocodone and/or if any other diagnosis presents to solve your pain puzzle.. I wish you both the very best. Thanks for your time.
Rachel

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Replies to "@amandaburnett and @trip17 I'm sorry for both of your pain journeys. Pain can be very complex..."

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?