@undiagnosed2016

What type of injections did you have? I am stumped a had it, I just can't see living in this much pain. My pain keeps getting worse so now its 8-9 all the time except for sleeping. I have had many injections and I finally did get a celiac plexus block down through radiology dept at our big research hospital. Gosh I thought this has to be it and it did nothing. I had a special doppler ultrasound to test for MALS and the surgeon who does do surgery said my flow numbers were fine. The strange think is I do have the J Hook that is usually the cause for MALS.

I am down to now PT and seeing a new councilor to try and relieve stress and anxiety. This pain has been going on now for over 3 years, started when nortriptyline stopped working for my mild gut ache. When I would stop taking it to see if I could go w/o pain came in a day. Took it for 17 years and then just slowly stopped working. Pain started as a daily 4 and has been over 8 since 10/1/20. I did have a high ejection fraction number of 94 so I took the chance and had the gallbladder taken out. That only helped my eating issue, I love to eat but slowly lost my appetite over a years times and lost 45 lbs from not enough calories. I now have been eating more since it was taken out and it was diseased they said but still have the same constant pain down the middle from xiphoid (seems like pressure pushing under/below it down to lower pelvis. It moves up and down as I call it the highway, always there but one will sometimes be more painful area than the other. it can fan out under the sternum/xiphoid area to the sides and same at waistband area.

I have consulted with Mayo GI and all they now can offer is drive from St Louis to Rochester. Thats a huge undertaking and honestly I dont think my pain level will allow me to do that trip. What kills me too is its Undiagnosed, best guess is neuromuscular disorder. I dont know how someone can live with this level of pain. At least with awful cancer you know what you have and can research it and fight it the best you can. I can't find anything to take the edge off.

One thing I read was about CYP450 or Cytochrome P450, its a genetics test to find out what pain meds or drugs wont work because your body wont metabolize them correctly. Has anyone ever heard of this? This could tell the doctor that higher doses of certain meds or finding something else to help. I just want some relief sometimes, to be able to get away from a level 8-9 all the time Its terrible that my body wont respond to Hydro, Oxi, morphine, Tramadol worked one time and got it to a 6.5 then I couldn't repeat it the next day. The hospital also tried dilaudid, nothing helps. I also had as I call it a One Hit Wonder with buprenorphine at a worked up to high level in a day and it moved the pain down the next morning to a 5, took most ot the lower pain away and a fair amount of the upper. It didn't help my appetite. It lasted about 36 hrs then I vomited and tried again during the week and couldn't repeat it. Other than that one injection helped me two years ago and it was the pain mgt dept at the hospital injected a lot of steroids' into they say my ilioinguinal and Hypogastric nerves, the areas they did this at was on each far side of my abdomen about lined up with the navel. I just remember them far apart on each side. That was in the first 16 months of this and I didn't know to press them to find out why. They did various other ones over the next year with no success like thoracic and intercostal.

I am at a loss, this pain is so bad. Other than reading a lot on this forum I don't know anyone who has ever had something like this that just starts out of blue and progressively gets worse each month. I heard good things about the Cleveland Clinic but doesnt sound like they figured out your pain issue. I keep adding more issues, after 3 years so around March of this year I started rubbing my foot back and forth on the floor. When my pain goes to 8.5-9 I shake it all the time, wearing holes in my socks. Best I can figure is this my body saying I need an outlet. It can be either foot but mainly do it with the left. Sometimes now and never happened before I have a delayed start to urinating, I know I need to go but seems to have to push/clinch to get going. Mornings are the worse, I can sleep for 4-5 hrs, get up and pee and get right back in bed I can go back to sleep. Though around 730-8am I wake up to go again and I can sit laying there not moving and the pain hasnt fully turned on like a light switch does, though when I get up and go to use the bathroom and come back to bed the pain is cooking full steam. This morning afterwards my pelvic pain turned on so bad it was a 9. Doesnt hurt to go its after, like my body will turn it off when I go to sleep and turns on when you awake and make your first move. I havent tried laying there not moving not more than a few minutes as I gotta go, Im figuring it would sooner or later turn fully on. Oh and occasionaly I get numbness in hands and feet, if I start moving them it will go away.

Your gallbladder is on your right side so I guess that can't be it. What is it that you think you have? SORRY for the long post but if anyone has any answers or thoughts please reply/post. I think I am going to try and have a hypogastric plexus block done to see what it would do for pain below navel. There really aren't anymore standard tests for me to have as I have had CT, MRI and ultrasounds. I have seen a urologist and they don't really know either, labs and scope of bladder were good. I will say it again I don't know anything worse than having a constant pain of 7 or higher all the time. Anyone who has this, and sounds like your about as miserable as me has my complete sympathy. I have one friend who had serious ear problems and was bad but not this bad and then my wife who is fully involved in this understand. Really no one can understand how bad this is, if your healthy you have no idea. It really destroys your life as your life is just about pain. When it gets so bad you can no longer distract yourself any time its misery.

Sincerely,
Rob