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56 Y/O Female with extreme burning pain. What to try next?

Hi all,

This is quite complex, so I will do my best to organize it.  Any help would be appreciated more than you could imagine! (well, if you're on this forum, actually, I am sure you can probably imagine it very well)

Most worrying symptoms:
- Extreme burning pain in lower abdomen (I can't take this!) - mostly in the late evening.  This feels internal, and not at skin level.  Best description:  A microwave is heating me up from the inside - first heat, then pain, then fire.
- Bad diarrhea for periods of up to 5 days (and never relenting for more than a week or so)

Other related symptoms:
- Fullness after eating even a little
- Sometimes pain in the upper abdomen
- Sometimes pain radiates to groin and inner thighs and back
- Movement or heavy lifting hurts (under ribs, particularly right side)

Symptoms I don't have:
- No nausea
- No acid reflux

Other important info:
- Have been on a series of antibiotics (cipro, augmentin, cipro again)
- Standing seems to alleviate the burning
- Have suffered from allergic type of disorders (was once hospitalized for anaphylaxis that closed my throat - 20 years ago)
- Gallbladder was removed 17 years ago (HIDA scan revealed a very low ejection fraction), symptoms were very bad upper abdominal pain at the time
- 130lb 5'6"

Tests run:
- Upper GI Normal
- MRI Pelvis + Abdominal (Normal - some spinal disk deterioration T11-T12), Sacral Tarlov Cysts seen.
- Fecal fat - normal
- C-Diff, Parasite Normal
- SIBO breath test Normal
- Full liver panel (Normal - no sign of pancreatitis, excess bilirubin, etc.)
- Blood allergy/intolerance (no allergies, some very mild food intolerances)

Timeline leading up to this:
1. Diarrhea
2. UTI
3. Cipro (did cause some GI discomfort while on it)
4. 2 months pass
5. Secondary chest infection
6. Augmentin
7. A month passes
8. Mild Covid
9. A month passes
10. UTI
11. Cipro
12. Burning starts for the first time during Cipro course
13. Two months later - still burning every evening.  Some days worse than others.  Going insane here, wondering if I'll ever be able to live again.

Things tried:
- Shuffled through entire diet, avoiding different classes of food, drink, medication (on mirtazapine, fexofenadine/Allegra, budesonide inhaler)
- Fasting (seems to help a bit, although it's hard to say that there were no symptoms since I also felt burning from hunger, but it did feel a bit different)
- Probiotics (every day)
- Omeprazole (no relief - just seems to make things worse)

Current thoughts:
- Undiagnosed SIBO (tests are not reliable)
- Mast cell disorder
- Histamine intolerance
- Neuropathy caused by spinal disc compression (apart from known disc issue, the burning seems to improve marginally when I stand up)
- Neuropathy caused by cipro (a possible side effect of the drug)
- Sacral Tarlov Cysts in MRI (may be compressed when sitting?)

The above are all pretty tricky to get a conclusive answer on, so I'm hoping that there's something I've missed and that someone here has some suggestions on what to try next, or a possible diagnosis I can look into.

Many thanks in advance!!!
1 Responses
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15695260 tn?1549593113
Hello and welcome to the forum. Sorry about your intense discomfort but thanks for the thorough post. I'm sure the idea of irritable bowel syndrome has been brought up to you at this point.  Are you working with a gastroenterologist?  IBS can look different in different people. There is no one stop symptom chart. Some have the diarrhea and discomfort you mention and others have terrible constipation and some people have both, unfortunately.  https://www.hopkinsmedicine.org/health/conditions-and-diseases/irritable-bowel-syndrome-ibs  You've already looked at diet although it doesn't hurt to look at what things trigger ibs typically and how you may still tweak it.  There are medications that also can greatly help different than the ones you've tried. Psychotherapy can help as it is often related to stress as well for flare ups. When was your last exam and what is your healthcare team thinking?  We'll go from there
Helpful - 0
Thank you  for your response!  Yes, IBS has been brought up by our gastroenterologist (also Gastric Hypersensitivity).  I am a little concerned that it is being used as catch-all for something that hasn't been diagnosed correctly.  The onset of these symptoms was very sudden - it seems strange to me that it should just start one day, and continue forever after.  I would also say that there was no stress trigger when it started (well apart from the general 2020/2021 experience I suppose...).  When my gall bladder dysfunction was finally diagnosed (HIDA scan showing a 13% ejection fraction) 17 years ago, it was after nearly two years of doctors calling it IBS and/or GERD (they prescribed Prilosec, Vicodin and mediation).   Of course, this prior experience doesn't necessarily mean it's not IBS this time, but I am just a little suspicious of doctors who jump to that the moment the MRI and (Upper) Endoscopy are clear, so I'm pushing to exhaust all alternatives first.

Our GI is saying that it could be "Gastric Hypersensitivity".  Our family doctor thinks that it still may be SIBO (the negative breath test has a high ratio of false positives), but also thinks that there is a remote chance that it could be due to a pinched nerve in the spine (the abdominal MRI showed some worrying signs).  I recently (Saturday) had a full spine MRI done, but we're still waiting for the interpretation of that.

More recently the burning sensation is extending from my abdomen to my thighs and knees, which to me is suggesting that it may be some kind of peripheral neuropathy, although perhaps that's just a neurological agitation/confusion from the GI generated burning in my abdomen.  There are still all the GI effects I'm seeing (yellow diarrhea on most days, floating stools, etc.), that come along with it and it's not clear to me whether or not peripheral neuropathy could be caused by this, or cause this GI behavior, or possibly be dependent on a common cause, or even just be two completely independent conditions.

Anyway, still plodding through this.  I am waiting on the spinal MRI impressions, and also considering taking the recommended SIBO antibiotic (I'm petrified of antibiotics at this point), to see if that brings any symptom relief (if it does, it suggests SIBO, otherwise something else).

Thank you for your concern and input!  It can be a little hard for me to rationalize all of this in my current condition.
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