Chronic stomach pain? What could this be?

[cmeds23]

I’m a 30 yr old female and I have Ehlers-Danlos Syndrome & Ankylosing Spondylitis.

I’ve had GI issues for years, but they’re really coming to a head now & I'm desperate.

I have ran the gamut with countless GI doctors at countless hospitals and nobody can find anything. If you can think of it, I have been tested for it - Crohn’s, colitis, celiac, MALS, SMA, cancers, vascular compressions, hernias, blood clots, structural abnormalities, gastroparesis, etc.
I do have a history of gastritis, but I have been told this would not be causing all of these symptoms/symptoms this severe.

•I have lost over 30 pounds - I’m currently under 85 pounds and 5’2”, which is horrific.
•I have chronic constipation - currently on both Motegrity & Linzess - at high doses & they do not work.
•Severe abdominal pain every time I eat - does not matter what I eat. It’s not the food, it’s me. The pain happens almost instantly.
•Epigastric fullness - feels like a belt is being tightened around my upper abdomen.
•Early fullness while eating - I feel like I ate thanksgiving dinner when I have eaten next to nothing.

I’m wondering if this could be some kind of nerve pain? The pain I feel is similar to the radiating pain I have from my spine into my arms/legs (where I have herniated discs). I know that’s an odd comparison, but that’s how it feels after I eat, but inside of my actual stomach.
Are there nerve diseases/disorders/chronic pain disorders of the stomach?

I seriously feel like my nervous system has just gone haywire.
I’m out of my mind here.

Thanks in advance.

[backhurtz]

Has your gall bladder or liver enzymes been checked out? Perhaps using both medications for gastroparesis is behind the difficulty? Have you done a barium swallow test?

[cmeds23]

I get all liver enzymes checked every 3 months by Rheumatology because of my treatment for AS. I’m on Methotrexate & Humira -both  injectable.

I have not had any tests done on my gallbladder, but my pain in not in that area, and I’ve been told my symptoms aren’t suggestive of that. I guess I could inquire with GI.

I’ve done barium swallows, CT/MRIs with/without oral & IV contrast, smart pill, upper endos, colonoscopies, Doppler ultrasound. I will be getting an MRA next week, but my team is doubtful it will show anything.