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Neuropathic stomach and esophagus pain

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Chronic Pain
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Posted 9/28/2018 8:42 PM (GMT -5)
I was diagnosed at the Cleveland Clinic with chronic neuropathic stomach and esophagus pain. Basically because they saw no damage on my upper endoscopy. And my pain rises and falls with the daily biorhythem of stomach acid.

Anyone have any useful experience with this?

1. Does it ever get better?

2. has anyone had a therapy that helps long term?

They said “there’s not very much we can do for you”. Their go to meds are gabapentin , celexa and nortriptyline. But they are only marginally helpful. They did not give me a prognosis.

Has anyone had this kind of symptom turn out to be something else...like MS?

I do not know where this is going.
Posted 9/28/2018 8:50 PM (GMT -5)
FYI I do not have gastroparesis. On the contrary I have rapid gastric emptying.
Posted 9/29/2018 7:43 AM (GMT -5)
I have not seen anyone in this forum have the issues you are dealing with. How long were you on Gabapentin & at what dose? As far as MS, this doesn't sound like MS symptoms, but we are not drs here either. You may want to check out MS symptoms at one the leading medical institutions websites.

Sometimes we can't always get the answers we need & it is so frustrating.
Posted 9/29/2018 8:46 AM (GMT -5)
Thanks for responding. I’ve been on gabapentin for 4 months. Before that Nortriptyline.
The Gastro specialist seemed to think they’ve seen this many times before. Which is why I’m putting feelers out.
Posted 9/29/2018 8:46 PM (GMT -5)
That your GI states that your abdominal pain is “something that they have seen many times before” leads me to suspect that your GI has identified yours as “functional abdominal pain syndrome” (FAPS) also known as “centrally mediated pain syndrome” (CAPS).

The pain associated with centrally mediated pain syndrome is real. It is not a psychosomatic disorder.

The underlying premise is hypersensitivity of sensory nerve ending imbedded in the wall of the abdomen as well as imbedded in the mucosal layering of the gastrointestinal tract (anywhere along its course, from the esophagus to the rectum). This is similar to other subtypes of sensory neuropathy (ex. diabetic neuropathy, chemotherapy neuropathy from platinum-based reagents).

Google “functional abdominal pain syndrome” (specifically) or “neuropathic stomach pain” (generally) to see if there are similarities in the clinical literature to what you are experiencing.
Karen
Posted 10/19/2018 5:31 PM (GMT -5)
Karen is spot on. They didn’t take the time to figure out which neuropathic disorder I have but going from the recent “Rome 4” criteria it seems like functional dyspepsia, subtype “upper epigastic pain syndrome”. Although that’s hard to separate from “centrally mediated pain syndrome” (CAPS). In fact there’s overlap between the two. Basically it’s an all day stomach ache every day.

Gabapentin is keeping me going. Reduces the pain enough to function. I can still work thankfully.

I’m constantly searching for ways to reduce flare ups. What I eat can make the pain much worse. I’m making a list of food to avoid.

A recent paper points out that people with this have increased duadinal/upper small intestine permeability for some reason. I figured out months ago I am wheat sensitive. Increased permeability would lead to that.

They said the pain is from my stomach acid. I shouldn’t feel it but it burns me.

Anyone else with long term experience with this?
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