GI Disorder and Internal Shaking

@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?

@clutch i could take up to 4 , 1mg pills a day but maybe did two. Didn’t help. Wigged means one outer body not like not in skin. Light feeling. Shaking up and down in chair. For a bit like getting up after 3 big shots of tequila. Weird d thoughts. Wife was with me so told her old stories or something never said before. Lighted headed. Mind tripping some by looking at things. Scared some like hold my hand.

An update and question for anyone with pain below navel down to waist line area. Yes I still have all the pain above navel to xiphoid but think on one side of the equation its two parts. The lower pelvic pain is getting worse. Over the last year I have been to a few urologists, went to one last week that basically blew me off. Its hard to find a doctor to treat a mystery or abdominal pain that doesnt tell the story with a CT of abdomen and pelvis with and w/o contrast. MRI done also. I can push right into the area of the worst pain, its about 3 inches down from navel in the middle of the pelvic area. When you push into my abdomen really anywhere down the middle it hurts but key points are the lower pelvis and midway up to xiphoid up the middle of abdomen. I asking anyone to reply please on pelvic pain. I am still in pain every waking moment. Its like there is a highway that runs top to bottom down the middle and the pain can travel anywhere on the highway but there is always pain lower and upper. Sometimes one out ranks the other for the highest pain level. When I push down in the middle of the pelvic pain area there is some kind of tissue or muscle that runs vertical up and down I can feel from lower pelvis to navel. I dont know what to call it and it might be normal but I would guess this is muscles and nerves. The pain can spread out at times along the waist line, so parallel, but the main pain for me has always been in the middle. If you push right in below the navel it will shoot the pain down the middle line to the lower pelvis. If you push above the navel it can go lower and go up the middle. The drugs I am taking or just my body is having constipation issues now on and off, more on lately. Though going to the bathroom doesn't relieve any pain. So today when pushing in the bathroom for a BM to come is like probably anyone else you are tightening up your abdomen to go. When I would push/tighten my abdomen the extreme level 10 pain ran right down the middle to the lower pelvis around my waistline. So the muscles used are right below the navel and there is pain there, but the focus was the pain that immediately shot down to that one area in lower pelvis. I have had urine tests and had a look inside my bladder and saw nothing. I have had but not in a while pain mgt injections to see if it would quiet the nerves. One time over a year ago I got steroids injected in the ilioinguinal and iliohypogastric nerves. The area as I recall was on each side/ a good 7-9 inches from the middle, at that time my highest level of pain was a 7, a day later the pain was gone in the bottom and must have did enough above the navel because I felt normal. It lasted two days and pain came back. Follow up was a genitofemoral block that didnt do that much. I did have a celiac plexus block and screened with a doppler ultrasound for MALS, block didnt help at all and even though I have the J line hook for MALS the blood flow wasn't constricted.

The pain occasional heads to my male organ but doesn't hurt so much as it can take feeling away. I am going to see a PT specialist a friend referred me too, its hard to believe that its pelvic floor syndrome and the pain will get better with doing exercises for pelvic floor disfunction. The only other part to add and its not all the time but it feels like the pain has a hwy from rectum to pelvic pain area. I really am stuck, other than my the one injection time the only other time I got relief and it was the first go around with this drug/Buprenorphine(subutex) a doctor had me taking about 4mg every four hours or so. Started on a Friday afternoon and built it up to a very high level by Saturday morning. My pain level went down to a 5 (good) but didnt help my appetite issue. I started losing my appetite a year ago and I love food but really picked up steam in December and then after going to the hospital to try and figure it out for days beginning of Feb 2021- the lose of appetite was very bad. So many days of under 1200 calories-I lost 22 pounds from June to Feb, then another 20 pounds by end of May. I have some nausea and feeling going up my throat at times but MRCP test didnt find anything, not really any acid but feeling some of the time that I have a lump in my throat. My GI guy who is stumped was good enough to run some tests Mayo MN GI dept recommended like a CT enterography and the test for MALS. I did see a surgeon about my gallbladder and he noticed from a hida scan done over a year ago that was said to be fine had in the report an ejection fraction rate of 94. More doctors are realizing that a high # can cause pain too. I had to try so had it taken out. It was diseased with inflammation and adhesions, all this helped was a week after surgery which happened 6/8/21 I started getting somewhat of an appetite. Though food still doesnt have any real satisfacton, the higher my pain level the more I dont want to eat.

Sorry for the lengthy post but I am at the end of my rope, my abdominal pain has taken all of my life way for at least 18 months with level 7.5-9 level pain and the 16 months before it was when I started to notice pain above my navel half way up was not going away, the pelvic pain started 14 months after the initial start. Every month it seems to get worse. I know rub my left foot mainly but depending on how I position my feet will rub the right one. I am wearing holes in my socks. When my pain is higher which is most of the time now my body seems to think this leg foot rubbing motion back and forth is a relief mechanism. IS THERE any places else to look for relief though on the pain below the navel/lower pelvis? I just dont understand if I can pinpoint the worst pain area down there with a few fingers pushing in why urologist and GI doctors are clueless. Pain Mgt at our top research hospital in St Louis is fairly clueless to abdominal pain, they treat more back, knee, shoulder pain etc. Can it really be all about PT, I did some a year ago but didnt keep it up that long? This is not pain one can live with for another 30 years, I'm 52 yrs old. Anyone else have pelvic pain below the navel around the waistline area, I figure over the top of the bladder? The doctors and test seem to all say my organs are fine and we don't see much of anything on the tests/scans. A low-attenuation cyst is seen lower pole right renal cortex that didnt alarm anyone. I had a hernia surgery 20 years ago which was on my left side about level line with navel, said there may be fat-containing left inguinal hernia. I would appreciate if anyone can comment about the pelvic pain. It doesnt go down my thighs and usually not in too much pain inside my inner upper thigh/hip area. Not sure again where I should be posting this, I did read a lot of the threads on pelvic pain but not really similar to mine. Thank you, Rob.

Hi, @gigiraj I've had most is not all of the symptoms you're having but they came about suddenly after my first anxiety attack. So, from what you're saying I think you may have anxiety from whatever personal triggers along with the constant worry you're having about your health all add to the anxiety and thus the symptoms. It was shocking for me to learn that anxiety can cause all those symptoms but it's true. It can do crazy things to the body, but it's just a stress response and nothing is actually wrong with you. So you have to break the cycle and find your triggers. It's not avoiding it, but the opposite actually. It's letting it run its course and not trying to stop it. Your body is just trying to help you even if it doesn't feel that way, so just let it.
A youtuber called Shaan Kassam has resources that really helped me understand it; a short report and other people's success stories.
The link is in the description and the best thing to note is that it can go away completely. Just understanding it all helped me a lot. Hope you're doing better by now.

I too have gastro issues and internal quivering in my abdomen when laying down or relaxing on couch. I do not have them when sitting straight up or walking. Mine started with severe vertigo, vomiting, severe stomach bloating and diarrhea. After 3 trips to ER with treating symptoms only, I was told that my gallbladder was full of stones and had to come out. This was removed December 30, 2020. After gallbladder removal I dealt with severe diarrhea, pain and swelling on right side. Was treated for IBS, put on bentyl, zofran, tramadol, carafate, prevacid. Endoscopy showed severe gastritis. I do not drink and CT scan shows abdominal athesclerosis, fluid in abdomen. Colonoscopy - precancerous polyps removed. After colonoscopy I am dealing with chronic constipation and abdominal bloating, vibrations in abdomen and swelling on right side. Gastro Dr. tells me to take stool softeners every day which helps somewhat. I am able to eat small meals now but symptoms are still there but not as severe.