GI Disorder and Internal Shaking

You would think being in USA and my 5th Gastro Dr., that someone could help me by now. NOT So.....Thank you for responding. I'm so sorry that you are dealing with this too. I feel bad for my husband too....it's been a long 7.5 years for him as well. MY kids are 28 and 32 so grown and gone a long time (now just 2 hours away from us). They are busy both engaged now. So I don't like to bother them w/ my problems. They know enough what's going on for so long. They too want me to go to the Mayo Clinic Jacksonville, FL (3 hrs away). So like I said...they have my records 8 weeks now and I'm STILL on Waitlist. I've had so many tests done and I know they will want to RE-DO all the tests which will cost us soooooooo much money in Co-pays and ded out of pocket. So on one had , I want to go so bad...on another...I don't want all the debt that comes with it. It's a double edge sword. Keep me posted on Cardio Dr. and if you see a Gastro Dr. ok...... My brother has been to New Zealand and they loved it. !! God Bless you too @debbie0985

Pinched Vagus Nerve most likley.

@Debbie0895. I have had gi pain from pelvis to xiphoid and it’s mainly all down middle of abdomen about 3-4 inch wide path. Had it for 3 years and every month gets worse last 12 months level 7.5-9 and I know how to tolerate pain from bad headaches for 25 years. Could live with those because I could bring pain level down some when spiking. No pills really work. Once when trying buprenorphine at 20 mg broken down thru day to build up in system I had a good 24 hours. Then next day body couldn’t handle it and vomiting. Lost 40 pounds over 12 months but half of it since Feb. 3 er visits over last year. Their pain drugs do nothing oxy, morphine, dauladin, etc. now I’m last 4 months I added a LEG shake. Not at night but once I wake up. The pain wakes up immediately and I feel stress from pain, chest pain tightens but the two main pain areas are under around xiphoid and around and below navel to pelvis.

It hurts all the time. Not really worse with food but can’t eat any big portions. Weight loss in last 12 months due to appetite keeps waning. I had CT’s, mri, MRCP, ultrasound, blood and urine, ct enterography, main injections from pain clinic including celiac plexus block. Only block that helped happened in summer 19 on each far side of abdomen. She said it was illoinguinal and hypogastric block with steroids. Day later basically no pain for two days then came back. Mri of back and lumbar done. New gi doctor said see my surgeon friend. He found my hida scan a diff doctor did late 2019 had an ejection fraction rate of 95. Many folks now getting gallbladder out with only that note from test. No stones seen. He said that or could refer you to friend who can test for MALS. I had to go to ER again two weeks ago due to pain. Went to new gi doctor and surgeons hospital. Stayed one night and their pills didn’t work. Didn’t sleep one minute. I decided I couldn’t wait another month and out with GB. That was 10 days ago today. See surgeon for first time today. I still think end result I will have navel, pelvis and xiphoid pain. Maybe gb gone will finally help with appetite but will have to watch what I eat. I want to see pathology report. He said it had adhesions, inflammation, high pile back up and distended. I don’t know if it was right to remove but felt had no choice. I know our symptoms are not the same but your the first that mentioned Shaking. I believe mine and maybe yours is a release for the body. Mine couldn’t take anymore holding all up and I tend to shake and if planted rub my left leg and foot back and wear my sock out. My arms or head upper body doesn’t shake but leg or other leg depending on sitting or leaning in bed does most of time. If for some reason pain comes down a bit to an 8 it might stop shaking. That last day I felt pretty good in March with the buprin drug I didn’t shake the whole day.

I have tried a few anxiety drugs to no avail and many antidepressants. One psychiatrist tested me dna and doesn’t think it’s any depression. Yes I am totally depressed, it hurts to walk but that might heal more but it hurt before surgery or couldn’t walk fast. I call it a gut ache. It always aches unless sleeping which it doesn’t wake me from. Though once I get 6-7 hours of sleep there is no laying down. Too much pain so I rub feet and rock a little sitting up in bed. It’s hard for all pain sufferers as it’s their Life now. It’s hard to participate and you are tired of people asking How are you , any better. I told everyone I will tell you on med updates just text me about what ur up to or kids doing. I only want to talk to a few people now on phone. If you don’t live with this kind of daily pain you Can’t understand. Some people don’t get that.

Please post back more of your story on the pain, how long, how often, does it move around. I don’t have much acid but can get a lot of nausea and gives me a bad feeling up thru chest into neck and throat some.

I have had some virtual appts with Mayo gi in MN. They have recommended more tests to do at home first. They didn’t think gallbladder. I know this is not pain I can live with for years, it has to change. No one can live with constant pain daily. I finally for now eating 1000-1400 calories a day. For awhile it was real bad. I don’t feel like eating until around 11am-noon. I take low dose suboxone when I get up along with 150mg Wellbutrin. I also take zolpidem 10mg at night to help sleep.

I’m not winning yet but can’t give up yet, I can’t do that to my wife and children. It’s hard though, I get it and your frustration.

@rt061069 You said you take low dose suboxone in the AM. May I ask why you are taking this medicine and what your experience has been with it?

@clutch I did a trial of bupenorphine when I was working with a psychiatrist and doing the nasal ketamine. He started me on 4mg. Then I call to Ck in then that next morning another 4mg. Then afternoon another 4 and I’m evening. My pain dropped 50%

I took as direct more that Sunday morning/next day and afternoon 8mg per directed. Them that night had dry heaves. It was for my constant gi AB pain I always have. The suboxone is being prescribed by a new palliative DO I am working with now. She takes things slow. She deals in people fighting diseases with pain. It helps calm me down a bit in morning with pain. Nothing else to try right now. Opioids tried here and there along with tramadol didn’t help. I was never an abuser or addict. Now looking into MALS with a special Doppler test coming. Running out of options.

@rt061069 ,
Were you seeking relief from depression when you were getting the esketamine treatments along with Suboxone? Did it help? Were there any side effects from the esketamine and suboxone together? I ask because I'm on suboxone and considering the esketamine therapy.

Hi@ rt061069, I read your story and I feel like you’ve been in so much pain. It’s not nice to live a life with a lot of things going on in your body. I feel for you. Sometimes I have bad days too but don’t think it is way near yours. While waiting for my cardiologist appointment next month I am changing my diet to low FODMAP. Which it does help with my gut but still can’t have too much otherwise I will have bad palpitations and start having short of breath. I always have aches and pain in my body but not so bad. I try to avoid taking pain meds as much as possible. But still quite uncomfortable and I have to put up with it while I’m working which is quite stressful for me. My internal shaking us more evident at night or when I feel I need to eat. During the day the aching prompts me to eat not because I feel hungry. I’m not sure why and my doctor doesn’t know the reason as well. I have all sorts of blood test done and CT scan but they can’t find anything. I hope my cardiologist will have some answers for me. Will post here if I have any progress.

@clutch I am depressed and due to lack of appetite had lost already 30 lbs. tried mainly for pain and anything to help situation. Did 6 treatments. Couple wigged me out for 45 minutes. Other drugs didn’t interfere. Clozapam didn’t help either. Not sure if full blown iv ketamine would help

@debbie0985

Pleas keep me posted on anything you try. Yes living in bad pain daily is debilitating. I have lived with milder ibs and migraines. This is too much. Just getting some relief once in a while would give hope for chronic pain patients.

@rt061069 ,
I am curious what happened when you were "wigged out"?
Also, were you taking clonazepam during the esketamine treatments?