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GI Disorder and Internal Shaking
Digestive Health | Last Active: Jun 23 7:30am | Replies (371)Comment receiving replies
@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.
Replies to "@Debbie0895. I have had gi pain from pelvis to xiphoid and it’s mainly all down middle..."
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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.