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Difficulty securing any help with pain issue
Around six months ago, I began to experience excruciating pain in my upper abdomen, centered at a very specific location just below my sternum. I stayed up for days at a time, pacing around my house to try to distract myself from the pain. I withdrew from my social life entirely, essentially becoming home-bound. I lost 25 pounds due to a sort of sometimes-off, sometimes-on relationship between food and the pain.
I visited the ER several times, and was treated, understandably, as if it was a GI issue. My primary care provider assumed the same, and after a few months I was able to consult with a gastroenterologist. Every subsequent test came up empty - an ultrasound, a CT scan, a chest x-ray, an endoscopy, a barium swallow, and probably a quart of bloodwork between all of the times I had it drawn. Unable to find any way to help me, my gastroenterologist discharged me.
My primary and I decided that the next logical step was to refer me to the local hospital's pain management clinic to see if there was a nerve issue that could be diagnosed and addressed. Having read many, many discussions on this board and others, I assumed we would talk about the nerves that could possibly be the source of the pain, and maybe arrange a block that could confirm this and, if I was lucky, even provide some sustained relief.
My consult lasted maybe ten minutes. I was ignored almost completely. My inquiries with regard to blocks were met with an admonishment that he couldn't do anything with that spot because "there aren't many nerves there," which is a lie so brazen and medically unsound that I was at a loss to respond to it. He sent a note about the potential use of muscle relaxants to my primary, vaguely alluded to learning to deal with the pain and acknowledging the psychological toll of dwelling on it, and sent me packing. As best as I could read the situation, which was so utterly unexpected and disappointing that I still have trouble wrapping my mind around it, he thought that I was exaggerating some kind of minor issue and wasn't worth his time.
Now, I've been on disability due to depression and anxiety issues for over a decade. I know that people are going to take this into account when they interact with me, and I try my best to accommodate their wariness as at least somewhat understandable. I was stuttery at the consult, and had difficulty expressing my concerns, as I pretty much always do when talking to unfamiliar people, and this became worse when it became clear that the doctor wasn't going to do anything for me. Nonetheless, implying that I was being hyperbolic after a solid half year of agony and the absolute gauntlet of tests required to bring me to his office was, to me, beyond the pale. I have absolutely no history of hypochondria. I have absolutely no history of actin out for attention. Outside of my mental health issues, I had virtually no medical history to speak of prior to this year. The idea that I would willingly subject myself to conversation after conversation with strangers - one of my least favorite activities in the world – for any sort of disingenuous reason is ridiculous, and any examination of my specific issues, rather than simply filing me away as generally unhinged, would make that obvious.
Whatever his reasoning, the consequence of the visit is that I now have a nerve pain issue that there has never been so much as an attempt to treat beyond throwing marginally effective, highly dangerous painkillers at it, and I have no obvious recourse. This is incomprehensible to me. Whatever you might think of my condition, physically or mentally, there is no logical reason to simply do nothing. What is the medical benefit of taking a course of action that is guaranteed to continue my suffering, rather than doing anything whatsoever that is even remotely likely to alleviate it? How is it in my best interests to throw up my hands and write off treatment as impossible when nothing - absolutely nothing - has been attempted? If I was grasping at straws, pouring my life savings into unproven treatments, I could understand that mentality, but I'm being told to give up before I even start.
Any advice with regard to what I should do from here would be very, very greatly appreciated. I've since followed up with my primary care provider, and she's looking into a few options: asking the local hospital's interventional radiology department to work with me in lieu of its pain management clinic's deliberate inaction, attempting to look farther afield for more understanding pain specialists (I live in rural northern New York, so the one I met with is essentially the only game in town), reaching out to the original specialist to ask him to reconsider his frankly mind-boggling reasoning. She's been wonderful throughout the process, and I'd like to think she'll come up with a solution, but it would still be nice to know what I could be doing on my end, or whom I could contact in the area - the state, the country, if need be - who might be more understanding of my situation. I apologize for the wall of text, but again, I'm still utterly dumbfounded by the entire experience weeks later. Many thanks for reading.
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Hello @eldyceo, Welcome to Connect. I know it has to be just awful to be in pain for so long without any answers or relief. You mentioned seeing a gastroenterologist and having CT scan as one of the tests they ran. The symptoms you describe seem similar to pancreatitis of some sort. I found this information and was wondering if your CT scan was a dynamic contrast-enhanced CT (CECT) which from what I've read is the gold standard test for acute pancreatitis.
--- Acute pancreatitis: current perspectives on diagnosis and management: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5849938/.
Have you thought about getting a second opinion or seeking help at a teaching hospital or major health facility?
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5 ReactionsI'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/mals
It 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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4 ReactionsHi there, John. Thank you very much for your concern.
Acute/chronic pancreatitis was actually the very first suspicion at my very first ER visit back in February. It made sense given the location of the pain, but has since been more or less excluded due to a confluence of reasons:
- My lipase levels have tested in the low range of normal four times over the past 6 months.
- My ultrasound and abdominal CT (the CT scan used oral contrast, but not IV) didn't reveal anything unusual.
- Other common symptoms failed to manifest. The pain is confined to a very specific area, and has never radiated to my back, for example, and doesn't seem to be affected by alcohol any more than it does anything else going into my stomach (I have limited data here, as I've been in no mood to drink for a long time, and have only had a beer on a couple of occasions, expressly for the purpose of seeing whether it would be unusually unpleasant).
That said, none of those things rules it out completely, and it seems that there are still unattempted testing options available; fecal elastase, for instance, seems easy enough to order, and I'd be more than happy to subject myself to that unpleasantness at this point. I'll definitely bring it up next time I'm in touch with my physician.
My primary care physician, as far as I know, is looking into options for a second opinion. I'd be more proactive myself if I had any idea where to start, but I have no idea what the protocol is for contacting other offices directly, and I have no idea which ones would be the most promising options. If anyone is familiar with pain clinics in New York and their receptiveness with regard to this sort of thing, then I'm all ears.
As for seeking out a teaching hospital, well, I'm afraid the pain clinic I visited is, in fact, affiliated with one, and the specialist I saw teaches there. I'm not here to name names or outright disparage people with whom I've only interacted briefly, so I'd rather not get terribly specific.
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2 ReactionsHi, 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.
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1 ReactionYou’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.
Find a good functional medicine doctor. They look for the cause of the problem and treat that, not just treat the symptoms. I've had problems with severe pain starting last summer, and my functional medicine doc did a ton of bloodwork and put me on an anti-inflammatory diet and lots of supplements. Turned out I had an intolerance to gluten, dairy, and refined sugar. As long as I avoid these foods, I'm fine. If I don't, severe pain in several parts of my body, including in the same spot you have it. I'm not saying this is the cause of your pain, just that you might benefit from seeing a doctor like this. The traditional medical establishment does little more than prescribe drugs, which apparently is what caused my pain and inflammation in the first place (too many antibiotics and vaccines over the years). Hope you find some relief.
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1 ReactionIf it is nerve pain try Gabapentin, it is only for nerve blocking pain. I was killed after a simple surgery to have a Botox shot in my inner sphincter to let a fissure heal. There never was a fissure. It left me with devastating 24 hour pain and no feeling or control of my rectum or sphincter muscle. Plus limited badder function. The surgeon dropped me after 2 weeks and 2 days of this second surgery. He said I was a “ long time drug seeker”. I never got pain meds from him for 9 months after seeing him and have urine tests my medicine manager for anti depression has 8 years of negative for opiates. I have not been able to get any 6 referrals through because he has written that in my medical file. The last surgery was April 5th 23 and for the first 6 weeks I had nothing to help for pain and did not know how to survive. I tried some gabapentin I had and it helped, because he destroyed some nerves in my rectal area. It is not a narcotic, so if you have not tried it, it is worth a try. Not expensive either.
I cannot get a colorectal Dr. at any university hospital to help me. Mayo Clinic is closed to colorectal patients. Without a doctor on record I can get no help for home health. My PC is a NP and is not capable of helping with this situation. I am in bed 95% of the time because there is no position to get pain relief, even laying, but I have to support my body. When weakly standing the pain is worse as feces goes to my rectum and pushes through the frozen sphinx to into my newly acquired depends and then a shower. I was never incontinent before. It is like ground glass inside my anal canal. I can only eat liquid drinks, like Boost. I still get nothing coming out with my stool softeners and miralax. I cannot go to any hospital because no one can tell them about my pain and dysfunction. My life is pretty much over. It has been 3 1/2 months of hell. I lost 35 lb. the first 1 1/2 months. My husband is my only help, no family for 700 miles. I have tried a neurology clinic, but no from them because the area of the pelvic floor is not accessible.
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2 ReactionsI believe that I can help you like I have helped others including myself of this horrible pain in the area you are talking about. It sounds like ACNES or abdominal cutaneous nerve entrapment syndrome. If you private email me I would be happy to discuss with you. I was cured and so can you if this is the diagnosis. Jeff in AZ p.s. Please go on youtube and google Carnett Test and ACNES.
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