Can chronic pancreatitis cause constant burning tongue?
Posted , 15 users are following.
I was diagnosed with chronic pancreatitis approximately three years ago, mainly based on slightly elevated lipase levels (usually appr 50-75, with the normal range at this particular lab being 15-48), as well as an intermittent slight tingly, prickly feeling in my upper left back. I also had a couple of episodes of what I now believe were acute pancreatitis (one about eight or nine years ago, then again two or three years ago), horrendous pain directly in the middle of my upper abdomen that did not respond in any way to the antacids that I gobbled at the time, knowing nothing of pancreatitis and just believing it was something stomach-related. I was not instructed to do anything different, i.e., diet, etc., upon diagnosis of cp. Admittedly, I was terrified at the time (and still am) of pancreatic cancer, and had no idea of the terrible nature of chronic pancreatitis, and considering that I did not have any daily/constant pain at the time, I did not go out of my way to find out what measures to take to try to protect myself against the progression of cp. Indeed, I had no idea cp was an incurable progressive disease.
Also, every imaging test I've had shows no sign of cp, only the lipase levels. I've had two CT scans, an EUS, an MRI, and various ultrasounds.
Over the last three years, the pain/discomfort/ symptoms have gradually escalated to the point where about a month and a half ago, things seemed to sort of turn a corner for the worse. I've had pain, burning, discomfort every day -- upper middle-to-left ab, as well as mid- to upper left back. Also, front shoulder ache, both shoulders, sometimes simultaneously, sometimes individually, in the soft area below collarbone.
And off and on for six months or so I've had a burning feeling in my mouth, in my tongue. It's gotten more regular over the last month and a half.
I started taking vitamin c and grapeseed a few weeks ago, though with no noticeable effect.
Anyway, I'm trying to find out if anyone else has this burning tongue/mouth. It seems to be directly correlated to the burning in my abdomen and back, but I can't find anything about it on the internet.
One other thing -- can anyone tell me if they've had their CA 19-9 tested, and if it has gone up? I had it tested first in May 2015 and the level was 16 (anything under 34 is normal), then tested again in April 2016 and it was up to 23, then tested again on December 2, 2016, and it was up to 25. My gastroenterologist basically waved it off as okay because it was still under the 34, and he tried to say that it was normal to 'fluctuate'. The thing is, to me, 'fluctuating' implies going up and down, whereas mine has only gone up. In the three times I've had it tested in the last year and a half, it has gone up nine points.
Sorry for the extremely long post. It's my first time posting on any site re: pancreatitis.
0 likes, 47 replies
Shenda Skribbler
Posted
AHHHH I've never been so happy to read a pancreas forum. I'm in the same boat. I think I've had CP for years. It got worse after having the gastric sleeve where my quack doctor cut the tail of my pancreas. For a year I was deathly ill and then a new doc did exploratory surgery and found that it had swollen and closed off my stomach. Anyway fast forward
I quit drinking I had not been a heavy drinker in years until they nicked my pancreas then I became a raging for about a year. Then quit smoking then gluten. I haven't had an attack in 3 years. My lipaise is always around 100-150. Left rib pain when it hurts bad or I eat to much fat or gluten it radiates up and down. Yes shoulder pain.
The specialist at UTSA blows me off.
I took creon. I made my blood sugars a rollercoaster(I'm not diabetic, yet)
The do not want the radiation dye test done every year I have approval for an MRI every year until is shows something bad.
Never had anything bad just slight swelling of it
Yes the upper left back pain. I have been asking for a few years about that. Go see a chiropractor for that. It's your alignment.
The object that feels it is stuck in side me is on my front left under my rib age. That's how I know it's acting up and I need to get my kid to a sitter.
OMG the reason for all this BURNING MOUTH SYNDROME. I've had it twice in the past year for 2 months at a time. My mother lost her tastes and smell 7-8 years ago. That's my biggest fear. I've tried every thing from oil pulling to vinigar to anti fungal. Lots lots more.
But question to all with BMS:
Do you use/have a yeti or other metal cup?
Do you eat/drink a lot of sugar?
Soda?
Just curious
Lots more
Let me know I'm trying to eliminate as possible.
Skribbler Shenda
Posted
Hi, Shenda (and Jolene, and everyone else),
Thank you for your replies to and comments on my post(s). Sorry for the delay in replying.
I have been dealing daily with constant burning and pain in upper left to mid-back, and in upper left abdomen, which sometimes extends across to right abdomen, but originates on the left. Also constant burning in tongue/mouth/back of throat, ache in anterior (front) shoulders (sometimes simultaneously, sometimes one at a time), tingling hands/feet, sometimes an ache in my right heel (not sure if related), heat intolerance (frequent sweating spells, interspersed with being very chilly, the least thing can set it off--my husband brushing against me, the cat hopping up on my lap, etc.), and screwy bowel movements. I haven't had a 'normal' B/M in many weeks. Instead of a usual smooth log once a day, I now have many different per day, almost every time I pee, often pellets, even with the daily metamucil, and varying in shape, size, colour, and texture. Occasionally floating. Also (sorry for being graphic), often some sort of mucousy substance comes out after I pee, whether accompanied by stool or not. Very farty/gassy.
I sleep very, very poorly. Take a half a Xanax (half of a 0.25mg tablet) at bedtime just to try to fall asleep and hopefully sleep for a couple of hours uninterrupted. Often doesn't seem to do much, I wake an hour later, then several more times during night. Toss and turn. Not sure if waking from ab/back pain/burning or from tingling hands/feet or from sweating or what. Sometimes hard to tell specifically what woke me.
Had CT scan in January which apparently was fine except for cyst on left kidney, which I have rececntly had a follow-up U/S on, and it has not changed, doc wants to repeat in six months. (According to docs, kidney would not cause this sort of ab/back discomfort I am experiencing.)
Also had another EUS in January (second EUS, first was in Sept 2015), and apparently this one was fine, too. Of course, the GI doc that did this one went in not expecting to see anything, was essentially humouring me, which was fine by me, I just wanted him to do it, regardless of what he thought of my state of mind. I did insist multiple times that he look very carefully at my entire pancreas, which he assured me he would and assured me he did. I can only hope he was able to see everything that he needed to see, and that he did look carefully. The procedure was very fast, perhaps twenty minutes. I was asleep, but checked the clock when I woke up. He seems to think I should look elsewhere (i.e., another branch of medicine, perhaps a neurologist). I just don't see how nerve issues could cause the type of gastro problems I'm experiencing. Also, my lipase levels are continually (on average) just above normal (usually in the 60-ish range, with 15-48 being normal. Has been tested as high as 79). This particular GI doc (the one that did my EUS, not my regular GI), basically just blows that off, saying my lipase levels could just be naturally higher than the average. I have a hard time buying that, as I have all these other symptoms. It would be one thing if I had no other symptoms, just a consistently slightly elevated lipase.
I have kept a food diary (from Nov to Jan) and eventually stopped noting everything I ate because it didn't seem to help. I have some level of pain all the time, regarless of what I eat. Some things may aggravate it more than others, but very few things make it noticeably better or worse. Also, it's not always consistent. Something might bother me more one time than another.
Overall, the pain and discomfort I'm dealing with just seems to be gradually escalating. When I step back and look at my notes, etc., and assess how I'm feeling, I realize it's gotten increasingly worse since I first started keeping track of everything and being tested and seeing docs for it three years ago.
Exercise sometimes seems to alleviate it, sometimes seems to irritate it. Sometimes/often, just don't feel like much activity.
Nothing helps medication-wise. Have been prescribed Pepcid (does nothing, of course), Levsin (Hyoscyamine), doesn't do much, if anything, ibuprofen basically does nothing (don't want to take too much of that), etc. Still, I find myself taking things in desperation.
I'm always frightened. Can't get pancreas-related issues out of my mind. If lipase were normal, then perhaps I could believe the imaging tests. But the combination of constant and escalating symptoms, along with the lipase, scares me. Also, my Ca19-9 went from 16 in May 2015 to 23 in Apr 2016 to 25 in Dec 2016. Normal is anything below 34. Scared to death to find out my level when I have my next lab work done.
Scared that the cyst on my kidney is really something pancreas-related. I asked the doc if they (the pathologist) could mistake something pancreas for something kidney, and he said no, not close enough. Which to me sounds wrong, considering that all online images I see of the left kidney show it right next to/behind pancreas body/tail.
Thanks to all who read through this long post, and many thanks to any/all who can comment in some way. I appreciate it, especially any who can alleviate my fears in any way. I wish everyone good health and pain-free, fear-free days.
jolene71163 Skribbler
Posted
Has anyone tested you for small intestine bacterial overgrowth? That is the only thing I have tested positive for. I have taken the antibiotics though and it doesn't help any of my symptoms but it can be tough to get rid of. Maybe something new to bring to the doctor. So they don't think it is related to your Lyme? I tested negative on the Lyme test but everyone tells me I need to have the western blot test done.
Shenda Skribbler
Posted
Sorry about my post the other day I was super tired, hadn't proof read it and didn't even know I posted it until now. Ha
I've been threw a lot of the same issues over the past few years.
The one thing I've really noticed is
Hydration
Hydration
Hydration
I even get IV fluids every few months. It helps with the shoulder and upper pack pain. I think it's not helping the burning toung either.
My PCP told me about 2 years ago that GI doctors are more interested in looking for what's happening now than long term care or issues. I went to 2 and a specialist. Stopped a few years back. I felt it was a waste of money.
Now my second Gastric Surgeon told me this and it always stuck with me.
"Just live your life!"
He went on to say. Don't drink, smoke or eat a bunch of crap and fat but live the rest of your life like nothing is wrong and you can do anything you want. Laying around scared doesn't do anything but make it worst and you more depressed. So for the most part I don't.
Also the physiciatrist put me on vyvance and it's been like a miracle drug for me. Doesn't help with the dehydration but I do more stuff now than I have ever imagined.
I can't really take ibuprofen because of my Gastric sleeve but I'll take 100-200 mg lots of water or IV fluids and some enzymes I got at the health food store (I don't have them with me sorry) hamer probiotic juices, ramodol or Vicodin and don't eat for 24 hours or until my eyesight and brain come back. Then try to eat only anti inflammation foods until I'm feeling good again.
Oh Maybe I didn't say anything but before I start to have a PA my eye sight starts to go, my memory disappears, I can't drive and can barely function. Normally with that regimen in 24 hours I'm almost back to normal but with in a few days my blood sugar goes on a roller coaster ride, Blood Pressure drops, I get super cold and real grouchy. It takes a while before I get some of my memory back.
angela33624 Skribbler
Posted
claudia91701 Skribbler
Posted
Hello again Skibbler....
OMG I just read your most recent post going back and your symptoms are absolutely 100% like mine which is unbelievable!
I am now again with another gastroenterologist with a teaching University who insist it's not my pancreas despite my elevated lipase levels. I am going for another MRI in the next few weeks! My heart goes out to you as I feel very alone in all of this! even my bowel movements are exactly the way you described yours and I'm extremely gassy.
the pain is daily and now many times is accompanied by nausea which I take Zofran for. Also when the pain escalates I get migraine headaches in the back of my head that are debilitating!!!!
I truly hope you check in to this thread with an update because I would love to chat with you!!!
praying you have found some answers and Improvement in your well-being
John-1 claudia91701
Posted
@claudia91701 How did your MRI turn out? Did you find any answers?
claudia91701 John-1
Posted
HI john-1..
I responded to your private message. I put off the MRI as I was disgusted with all the testing and no answers. I did have an MRI one year/10 months ago and that was clear. My gastro doctor has given me another script for an MRI and I guess I am going to have to go again this time as my pain is increasing. I gave more details regarding my symptoms in my response to your private message. Hope to hear back from you.
angela33624 Skribbler
Posted
claudia91701 Skribbler
Posted
Hi Skribbler..
I noticed your post is two years old however I wanted to respond to your question.
I was told I have CP one year ago just prior to and following my gallbladder removal. the doctor based it on my slightly elevated lipase levels. I too have never had anything show up on an MRI.
My pain is exactly the way you described yours... migrating from upper abdomen below the ribs through to the back up to the shoulder sometimes across the shoulders and actually up the side of my neck however my pain is mostly on the right.
I too in the last 12 months have been experiencing a burning tongue when my pain escalates! you are the only other CP patient that I know of that describes this symptom. did you ever find the reason behind it? I think it is nerve-related!
like you I am terrified of this condition as my grandfather had pancreatic cancer and I don't want it to progress. funny thing is I was never a drinker. I do smoke and I'm trying to quit but it's very difficult.
I have lost over 20 pounds and can't regain an ounce. They prescribed Creon but it almost seemed as though it made my symptoms worse. Hope you will get this response to your original post and have gotten some help and answers. I look forward to hearing back from you!!!!
John-1 Skribbler
Posted
@Skribbler, did you notice that your symptoms were any better or worse when:
I have similar pains as you and slightly elevated lipase and trying to also figure out what is going on.
rachel0000 Skribbler
Edited
Hi, 3 years on, wondering how you are?
I'm in the process of having tests to diagnosed the cause of pancreas enzyme insufficiency but have been suffering a burning tongue for about a year now. Doctors just don't seem to want to hear that it feels linked......
From the information I have gathered, it could be related to B vitamin deficiencies, but in my case it also feels directly linked to my stomach issues and food. I often put food in and have what feels like an instant reaction, I'm left with sores at the back of my mouth and a burning tongue.
I have also had problems with my neck and some docs have said it could possibly be nerve damage or burning tongue syndrome. So this could be a possibility also....
Anyone got any answers on this? Would really be helpful to hear more.