Can chronic pancreatitis cause constant burning tongue?

Hi, Candice. Yes, I have heard of the TP/IAT surgery, though admittedly I haven't researched it thoroughly. At this time, I would say, no, I wouldn't consider it. From most things I hear about pancreas-related surgeries, the patients often seem to find themselves in worse shape afterwards than before they were operated on. Certainly not always, but often. Again, I know very little about any of it, just things I've read here and there.

Yes, I have lost weight, presumably from my limited food intake. I don't know what I can eat, so I eat little. I do feel sometimes as though I'm in a nightmare, if you'll forgive me for saying so, because I sure do love to eat. Not that I was exactly overweight before, but I love my ice cream, for instance, and now I feel rather lost without being able to indulge in my bedtime treat. And worse, it's not as though abstaining makes me feel great/pain-free, but if I don't, I'm afraid of the worse consequences.

Anyway, apologies for rambling. I'm trying to find out if anyone has ever heard of or experienced burning in their tongue/mouth with cp. I have a constant burning sensation that seems to be directly connected to the burning pain in my left mid-to-upper back, and left-to-mid-abdomen. Also, over the last few days, the shoulder pain/ache has been quite severe, front and back, both shoulders, alternatingly and sometimes simultaneously.

Thanks for your response and any advice you have.

I was diagnosed with CP over a year ago and now my GI doctor doesn't think I ever had pancreatitis. My tongue bothers me a lot. It feels sore and I keep getting little sores in my mouth too. I don't get shoulder pain but I get a pain in my ear usually when my upper abdomen hurts. I was on Creon for about 9 months for the diarrhea. I'm off of it now and no diarrhea! Seems we all have different symptoms!

Nina out of interest, we're you ever tested for crohns? It's associated with mouth sores

Crohns is associated with mouth sores. Not sure if you've been tested for this? I'm in the same boat as you. Can barely eat. Weigh 39kg 85 pounds. Struggling like crazy.

I've been tested for everything! I was told over a year ago by one GI doctor, that he thought I had CP, then was told a few months ago by another GI doctor, that he didn't think that I ever had CP. He thinks I have IBS. I've been feeling a bit better lately and now am putting on weight again so have to watch my eating. I completely changed my diet to eat nothing but natural healthy foods when I was diagnosed with CP and I attribute that to my feeling better and losing 20 lbs. So since I was feeling better I started to eat more and added some not so healthy foods to my diet and gained 10 lbs back, so now I'm trying to diet again.

Hi, Candice. No, I haven't been tested for Crohn's, but I don't have mouth sores. Specifically, it's a constant burning sensation in/on my tongue, almost as though it's some burning substance in my saliva. (But it's nothing related to any kind of indigestion, acid stomach, heartburn, or anything like that. Absolutely no reflux of any kind, never have had anything like that.) This is why I'm so confunded and frightened. No one seems to have any idea in the world what I'm on about, but the constant burning mouth/tongue seems to be directly related to the burning in my upper-mid left back and upper abdomen. And now these last few days I've had almost non-stop aching in my shoulders, in the soft spots just below my collarbone, and some in the back (shoulder blades) also.

All of this constant pain and burning together is scaring me more than I can describe. I took two ibuprofen for the shoulder ache yesterday evening, and it basically did nothing to help. That also scares me.

I have consistently elevated lipase, which of course indicates pancreas. I had an abdominal ultrasound on Dec 2nd which apparently showed a nodule of some sort on my left kidney, appr. 1.2 cm in size. I also have been on medication for a hyperthyroid since Sept 2015, a steadily decreasing dose, which I finished a little over a week ago, per previous instructions from my endocrinologist.

I'm not sure if there is any possible connection between chronic pancreatitis, hyperthyroid, and a kidney nodule. I'm just so confused and scared, diagnosed with chronic pancreatitis three years ago, evidently based on lipase levels and physical symptoms alone, as the different imaging tests I've had done over the years, has apparently not shown anything with the pancreas. But the lipase stays elevated for the most part, and the ab/back pain and burning has increased from a slight annoyance a year or so ago, to a constant, un-ignorable sensation over the last couple of months. Terrified of cancer. Have appt w/gastro tomorrow. Haven't had an abdominal CT scan of pancreas or EUS since 2015, feel sure I need a repeat of one or both for comparison's sake to the first ones, but am equally sure I'll have to fight with him to get him to order them. His argument is always that the tests came back negative, no need to repeat. My argument is that the pain has increased since then. He of course just thinks I have anxiety issues and that makes him less likely to do the tests. Which upsets me even more because only I know how the pain and discomfort has increased. It's a big vicious cycle, with me suffering the consequences.

Sorry for long response, and thanks so much for your input.

Hi, Corinne and Candice (and everyone), thanks for your responses/posts. I hope you're having a good morning, without too much pain or anxiety.

As far as I know, I've had two attacks of acute pancreatitis, although I had no idea at the time that that was what it was. The first was about eight years ago after eating plain baked flounder, plain steamed broccoli, and brown rice. Bland meal that had never given me trouble before. But I suffered for severals hours afterwards with intense, severe upper-mid abdominal pain that I thought at the time was some kind of severe, sharp stomach pain, and I took multiple antacid tablets in desperation, not understanding why they weren't touching the pain. Eventually it subsided, afters hours lying on the sofa in near-agony.

The other time was perhaps three years ago, after eating a pear. I had never had a problem with pears before, though I admittedly didn't eat them very often. The pain was excruciating, and again, I had no idea what was happening, thought it was some terrible stomachache, though again, the Tums didn't do a thing of course. This time the pain was so bad, I thought I'd have to go to the hospital, but it subsided after about an hour.

I had an appt this morming with the same gastro who did my EUS in Sept 2015, and explained my current symptoms as best I could, and asked for a repeat of the EUS to compare, since my symptoms are constant now, as opposed to 15 months ago, when they were intermittent, or at least milder. He, as I knew he would, resisted the idea, said no to the repeat EUS. Simply because the last one was supposedly normal, even though my symptoms are now constant and more severe. He said he would discuss possibly doing an MRI with my regular gastro, and get back to me. He basically waved off my elevated lipase, and even said he didn't think it was chronic pancreatitis, which my regular gastro diagnosed three years ago. Although the doctor I saw today, did not offer a definite opinion on what he thought it was.

As I keep saying, I'm terrified about my blood tests, the fact that my CA 19-9 has crept up to 25 (with under 34 being normal), but the doctor waved that off as well, saying that test is not definitive. I argued maybe not, but it's the closest there is.

I feel that it must be pancreas-related, I just do. The physical symptoms and blood tests all point to that, and no one is giving me any reasonable alternative possibility.

So now I'm waiting to hear back from one of them, to say what to do.

The upper-mid ab pain continues, as does the pain in my mid-back, and the burning tongue. Also the ache in my shoulders. And I have a bloated, full-feeling, even after eating just a little. I've been keeping a pain/food diary in desperation, since appr Nov 11.

Well, it's late here, after 12:30am, and my husband is waiting for me to go to bed.

I hope everyone is having a good night/morning.

Hi. I went to the gastro on Tuesday, Jan 3rd, not my regular gastro, but the one who did my EUS in Sept 2015. I explained my symptoms and requested a repeat EUS, which he refused, as I was sure he would. In desperation, I asked if he would repeat it in Sept, after a 2-year time-lapse, and he said no. He said he didn't think it was my pancreas (even though my regular gastro is the one who diagnosed chronic pancreatitis appr. three years ago, and even though my lipase comes back nearly always elevated. This doctor said lipase could fluctuate because of other factors, though he did not cite any actual reasons, just vague possibilities. He said he didn't know why my lipase was tested so often anyway! This guy has been very skeptical of possible pancreas problems every time I've seen him, however, and for some reason seems reluctant to admit that that could be the problem, even with all these symptoms staring him in the face. And furthermore, he offers no plausible alternative diagnosis.)

He finally agreed to contact my regular gastro and discuss ordering an MRI. He said he (or my regular gastro) would call me that afternoon or the next day to let me know what they decide, but now it's Friday night, and I haven't heard back. And of course now it's the weekend also.

The upper- to mid-left abdominal and upper-mid-left back pain/burning/discomfort is constant. It's a buzzing feeling in my left upper back, and burning in my upper ab, just below my sternum, often mostly on left, and it increases as I eat. And a burning tongue, which is constant.

Also, I wanted to mention, and ask if anyone else has felt this -- I feel like something is against my upper-mid left back, especially when I lean back against the sofa or car seat -- it feels like something, some object, between my back and the sofa or car seat. Just to left of my spine, at the appr level of my bra strap (I don't know what number rib)(and it's not my bra, the sensation is there even when I'm not wearing a bra. I just used that description to explain the appr location.). It's the same place as the buzzing pain, exactly mirror-opposite the upper-mid left abdominal pain. This is one sensation I did forget to mention to the gastro on Tuesday, I was so desperate to get all of my symptoms/concerns across to him at the same time as arguing for repeat/comparison testing. All the while trying to appear as calm as possible so he wouldn't just chalk me up as hysterical as he did last time.

The pain and discomfort and symptoms have just escalated so much in the last two months that I'm very frightened, in addition to suffering the actual physical pain. I feel so alone and depressed, and the fact that these doctors don't know anything about pancreas issues, not really, makes it all that much worse.

Thanks.

Oh, and I meant to say, I've tried ibuprofen, and it does nothing to help the pain/discomfort.

If you read about Burning Mouth Syndrome you 'll see it can just go one day. Try chewing gum it helps.

Hi. Shortie. Thanks for your long and thoughtful reply. I hope you are doing well. Since I posted most recently, I have had another CT scan as well as another Endoscopic Ultrasound (EUS), this one performed by a different doctor (in Hartford) than did my first one back in Sept 2015.

Both tests apparently came back normal, as this doctor seemed quite certain that they would. I still have the burning upper left ab, and mirrored burning/prickling in my upper left back, as well as the burning tongue/mouth. I don't get a lot of gas/bloating (knock on wood), but I do have a lot of weird tingling often in my hands and sometimes feet. Often I wake up with tingling fingers and have to stretch my neck/shoulders to stop the tingling, which the stretching does, like a light switch being flipped, as though a pinched nerve is being released. I have scoliosis, so I'm not sure if that has anything to do with it.

I also have hyperthyroid, and was on methimazole for a little over a year, before weaning off at Christmastime. (I went from 10mg, to 5mg, to 5mg every other day, then stopped, all per my endocrinologist.) I also have thyroid nodules which I had biopsied twice (first time was inconclusive) about a year and a half ago, and they were evidently okay/benign, though he wants me to have another U/S next month, as well as test for Grave's disease along with my regular blood work. From all I read, hyperthyroid is much less common than hypo. And since no one seems to be able to give me definitive explanations for my ab/back pain/burning, and mouth/tongue burning, I have to wonder if this is all somehow connected (thyroid, pancreas), even with the imaging coming back apparently normal. Again, my lipase levels are consistently slightly elevated.

This Hartford GI doctor that I saw seems to think that those numbers are just my own 'normal' numbers. I also have Lyme Disease, was one of the first diagnosed with it back in 1979, when it was called Lyme Arthritis. I grew up basically in the heart of Lyme country (in a neighbouring town). There was no cure/treatment for it back then, (only high doses of aspirin for pain and swelling of the joints), nor did I ever seek treatment in the following years/decades. Long story, but when I was diagnosed, it was by the founder of the disease, a doctor at Yale New Haven Hospital, and in later years he moved up to Boston, and I refused to see anyone else because I had so often come across doctors who knew less about the disease than I did. Very disheartening. Anyway, this GI doctor thinks I should see someone about it now, be re-tested after all these years, seems to think there may at least be a possibility that there is a connection between my current symptoms/problems and the Lyme. He figures it's a starting point anyway. Again, I wonder if there is, or could be, some tie between the pancreas/lipase issues and the hyperthyroid and the Lyme and the burning tongue.

Also, I had two (more) teeth pulled on Tuesday (I had two pulled a year ago, as well), sort of in desperation. I read a very disturbing article recently about the connection between certain oral bacteria and pancreatic cancer, which somehow did not surprise me, although it frightened me very much. I have had many root canals in the past, and I wish that I hadn't. They're a breeding ground for bacteria. Anyway, I won't ever get another one--I'll just have the tooth extracted instead. Still, though, the burning continues.

Anyway, thanks very much for listening and for any advice you have. I really appreciate it, and I hope you get some proper answers soon as well. It's horrible to feel pain and discomfort and no one can explain it, and more importantly, fix it. And I completely agree with you -- I know my own body. I may not be able to explain or describe or articulate the symptoms properly to these doctors, but I know what I feel and how not right it is. As I type these words, my mouth/tongue are burning, and my upper left back is prickling.

Take care.

Hi Skribbler,

I saw my specialist recently and told her how my tongue burns as well as my other symptoms. She told me that acid reflux can cause a burning tongue. If you have pancreatitis then you're most likely to get acid reflux (even if you don't feel it). The acid will build up and cause bacteria but if you take some acid reflux medication and do your normal brushing routine then it should go away (it has for me). She did say that alcohol mouth wash would make it worse, so I would stay away from that kind if you're using it. I hope you get some relief soon.

It is scary how similar my issues are to yours! Started in August of this year with a weird feeling under my right rib. Went to Dr and had elevated lipase levels. Had a Ct scan at the hospital which was normal and was told me lipase levels were normal. Had a gallbladder scan, an MRI showed shadowing on my pancreas but they still said not pancreatitis. Went to the director of pancreatic research at Brigham and Women's in Boston he told me it wasn't pancreatitis. He also said my lipase was normal. Ended up having an EUS which they said was normal. For me the pain goes away when I lie down. I have been going to physical therapy and they tape my stomach, they say my ab muscles are separated. But in the past few weeks my back hurts like you said in the middle right were my bra is. Then my hands and feets started to tingle. I am doing b12 shots as my b12 is on the low side of normal. Just the other day my tongue started to be sore and feel like it is burning. No one can tell me what is going on with me. I have seen 3 gis, a functional medicine doctor and countless others.

@jolene71163 - Were you able to figure out your issue?

Did/do you notice that your symptoms were any better or worse when:

• You first woke up in the morning?
• Directly after you ate (if so, how long did it take for the pain to start)?
• Position that you were sitting?
• Sitting vs laying down?
• Movement or exercise - did it make it better or worse?

I have similar pains as you and slightly elevated lipase and trying to also figure out what is going on.

Hello! i came across your post. Has your condition improved? I think the burning tongue can be similar to the elevated lipase... or B vitamins related to nerves. I read lipase is formed in the pancrease, stomach, and tongue. Also that B1 and b12 are very important for nerve functions and i was low in both, and saw another reply where the person had nerve sensitivities. Have you learned anything that stood out to you more? Wishing you the best.

Hello Skribbler, i came across this article and hope your condition improved. Reading these replies it seems many of us may have nerve issues that coincide with symptoms. I too have burning mouth and elevated lipase although i was able to bring it back to normal when i ate vegetarian (fats are not good with elevated lipase) so protein needs to come from beans, lean meats, etc. It went back up though when i ate "normally". i read normal

lipase can be up to 160 ul but Quest Labs has a much lower number. Sometimes i get ringing in my ears too. I learned earlier on i was low in some b vitamins related to nerves (can be googled). When i took larger vitamin doses for that it seemed to go away but I think it gave me night sweats. Those seem to be going away now too. Anyway i hope you are well and the symptoms have lessened. Kindly,