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Difficulty securing any help with pain issue
Chronic Pain | Last Active: Jul 29, 2023 | Replies (8)Comment receiving replies
I'm so sorry this is happening to you. This isn't an area that I'm completely familiar with, but I have functional GI pain/symptoms and also a cornucopia of other chronic pain conditions and can sadly relate to your feelings of frustration and desperation, along with the skepticism from other providers.
For what's worth, it's them, not you.
You mentioned the pain and weight loss, but what other GI symptoms do you have? I wonder if others might be able to help point you in a direction if we knew a little more about what you're experiencing. You might also try posting to the Digestive group on Connect also.
But, the one thing that popped into my mind is: Have you or the GI doctor you saw considered MALS (median arcuate ligament syndrome)? It's actually considered a vascular condition, not a nerve condition. The MAL (it's a ligament) compresses the celiac artery and can cause both pain and GI symptoms. There's another related condition, but I'm completely blanking out on the name of it right now... I think because it causes GI symptoms, but it's a vascular condition, it's one of those pain conditions that falls into a hole in the system.
You can easily find info on it online, but this is why I thought of it when I read your post: "MALS has symptoms similar to appendicitis, stomach aches, IBS and other stomach issues. Some people may even be told the pain is "in their head." This can make its diagnosis a long process, and people can sometimes go for years without a proper diagnosis, which can lead to mental anguish."
https://www.umms.org/ummc/health-services/heart-vascular/services/vascular-disease/conditions/vascular-compressions/malsIt sounds like your PCP has been supportive so far. If you haven't yet, do you think you could talk to them about if it may be a vascular condition? A neurologist brought this condition up to me, and I remember her saying it would be a vascular surgeon who evaluated it...but you'd need a vascular ultrasound. Maybe an interventional radiologist would even be able to treat it. I think it depends on who has what specialty.
I don't mean to sound so wishy washy, but it turned out to be unlikely to impact my symptoms, so I didn't fall too far down that rabbit hole (though I've fallen down many other ones related to chronic pain). I wanted to mention it in case it might help you.
If not, maybe try posting to the Digestive Health area in Connect, and there may be others who could also help.
Truly, I'm wishing you all the best and hope you find answers soon.
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Hi, emo. Thanks so much for responding.
The thing is, my GI behavior throughout this has been remarkable only for its unremarkable...ness.
- I've been burping a bit more than usual, but I've also been eating a lot less, and those things have always seemed to go hand in hand with me.
- My only real bout of diarrhea was while I was on an antibiotic course for a potential h. pylori infection, which is likewise par for the course when it comes to me and amoxicillin. The biopsies taken during my endoscopy definitively ruled out such an infection, and it's been a nonissue ever since.
- I'm occasionally nauseous, and I vomited a couple of times during the early stages of the issue, but that only happens when the pain is at its absolute worst, referring to the rest of my body to the point where my calves and the backs of my forearms ache.
- My gastroenterologist raised concerns about a hiatal hernia pursuant to my endoscopy because he thought the shape of my stomach was unusual, which prompted the barium swallow, but everything turned out to be right where it should be.
And that's...about it. There just isn't a whole lot going on there outside of the pain.
I'm actually very glad that you brought up MALS, because I actually forwarded some literature on it to my PCP in anticipation of my follow-up, and I was worried that I was an idiot for pressing the issue with regard to such a rare condition. It just seems like one of very few options that accounts for the location of the pain, the absence of GI issues, and the response to food all at once. My PCP plans on having the hospital radiologist review my CT results with my celiac artery in mind (the CT was performed offsite), and going from there. I think she wants to pursue further testing regardless, but I'm definitely going to push for it if she's seeming to let it fall by the wayside. It just seems like it fits better than any of the (very many) other possibilities I've looked into. It's also one of the things that made my pain clinic visit all the more frustrating, since as I understand it, a successful celiac plexus block could potentially both provide a respite from the pain and help toward a MALS diagnosis.