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Difficulty securing any help with pain issue
Chronic Pain | Last Active: Jul 29, 2023 | Replies (8)Comment receiving replies
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.
Replies to "Hi, emo. Thanks so much for responding. The thing is, my GI behavior throughout this has..."
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You’re welcome, and I appreciate your detailed reply. I know it can get exhausting to repeat it, and I appreciate you sharing the information.
Hmmm. You’re right, this is tough =/ I do see what you mean about how some of your symptoms fit, but others not so much. I remember when I was reading about it before the way the symptoms were described seemed a little fluid… I’m not sure if people might experience them differently and to different degrees and combinations.
It’s possible you could have an “atypical” presentation. Both my dad and I have chronic pain conditions that were difficult to diagnose because of the “atypical presentation.” (That’s what they wrote in our charts.)
It does seem like a second opinion might be in order, but where to go with limited options? Do you think it would be possible or worthwhile to get a second opinion at the pain clinic where you went? I suppose it’s ideal to go to a different place and potentially less awkward. But if your options are limited, maybe?
I got second opinions twice, in two different specialities at the same academic medical center. Well, one was clearly framed as a second opinion (then a third!) It was suggested by my PCP, which helped.
Another time, I framed it as “fit,” and that really was true, except I was also motivated by wanting a second opinion. I actually did it a this time in another specialty—switched from one provider to another within the same clinic because of fit. None of them seemed bothered by it. (I realize this might make me sound like a physician shopper, but I’ve had to be seen in a lot of different specialty areas and with my underlying condition and medical trauma, I really need people on my team who are going to be good with both.)
Given that the pain specialist you saw seemed to be not very engaged at best, they might not respond well to it. And that can be awkward. But I always tried to remind myself it matters more if I feel comfortable and that I figure out a way to feel better. Easier said than done though.
I wish I could think of something more concrete to offer, other than to say you’re not alone and a lot of us have been there…even if not specially with these symptoms. I hope your follow up with your PCP goes well, fingers crossed.