View Full Version : In a big rut over abdominal and back pain that’s getting worse
I have been pretty good over last couple of years re the health anxiety but it is back with a vengeance again currently. 5 weeks ago I had a 2 day vomiting thing and then after that was left with burning around stomach area and constant nausea. I went to doctor and got referred for colonoscopy (only cause I was due for one) and gastroscopy. In the meantime I then went into downward spiral of worry that it is something awful. The pain is then very much in the left under my ribs and into my back. Lots of burping and burning tummy, but the dull ache is the worst - and this has of course made me paranoid about pancreas. I know this has happened before so I have tried to comfort myself that it turned out to be nothing before, but in normal health anxious fashion I'm thinking but this is different this time, it has gone on longer and seems to be getting worse rather than better. Usually when I have a test I then feel better and relieved and then the pain seems to go away, but this hasn't happened this time. The results were fine on the 2 scopes, it only showed mild gastritis which my dr didn't think would cause my pain, and possibility of coeliacs but nothing definite (and unlikely to explain the left upper pain). I had ultrasound and this showed all normal but this hasn't stopped the pain or my worries. My normal GP said it's just stress and she is refusing any further tests, just suggesting that I need to go on anti anxiety medication. She made things worse by saying if it was your pancreas then there's nothing else she could do for me anyway! Who says that to someone they know has health anxiety!
Anyway, I'm going to new GP for second opinion tomorrow and to request MRI. I will be telling her I have health anxiety and that I need this test for reassurance and then I want to go back to see her to deal with my health anxiety, either through referral to psychologist and/or anti anxiety meds, but also something for the pain which is not all in my head!
Sorry for the vent, just needed to get it out as I'm terrified about this!
You have to trust your doctor. You have had 2 very definitive tests. Why put yourself through more tests? Do you honestly think that an MRI is going to make your fear of pancreatic cancer disappear?
paranoid-viking
27-11-16, 12:24
I have been pretty good over last couple of years re the health anxiety but it is back with a vengeance again currently. 5 weeks ago I had a 2 day vomiting thing and then after that was left with burning around stomach area and constant nausea. I went to doctor and got referred for colonoscopy (only cause I was due for one) and gastroscopy. In the meantime I then went into downward spiral of worry that it is something awful. The pain is then very much in the left under my ribs and into my back. Lots of burping and burning tummy, but the dull ache is the worst - and this has of course made me paranoid about pancreas. I know this has happened before so I have tried to comfort myself that it turned out to be nothing before, but in normal health anxious fashion I'm thinking but this is different this time, it has gone on longer and seems to be getting worse rather than better. Usually when I have a test I then feel better and relieved and then the pain seems to go away, but this hasn't happened this time. The results were fine on the 2 scopes, it only showed mild gastritis which my dr didn't think would cause my pain, and possibility of coeliacs but nothing definite (and unlikely to explain the left upper pain). I had ultrasound and this showed all normal but this hasn't stopped the pain or my worries. My normal GP said it's just stress and she is refusing any further tests, just suggesting that I need to go on anti anxiety medication. She made things worse by saying if it was your pancreas then there's nothing else she could do for me anyway! Who says that to someone they know has health anxiety!
Anyway, I'm going to new GP for second opinion tomorrow and to request MRI. I will be telling her I have health anxiety and that I need this test for reassurance and then I want to go back to see her to deal with my health anxiety, either through referral to psychologist and/or anti anxiety meds, but also something for the pain which is not all in my head!
Sorry for the vent, just needed to get it out as I'm terrified about this!
Hi. I see that there are quite a few of us in the pancreas fear segment. Your experiences sounds similar to mine except for the vomiting of course. Do you have medicine for stomach acid like nexium? Before I got nexium, 10 years ago; I ocasionall had heartburn so bad that I puked up food or drink or whatever.
It sounds like it could be mild gastritis; that is probably what I have too. I am going to endoscopy in February.
Your GP could have put it more nicely I would say than saying the way she said things; but I dont think I would recommend doctor shopping to get a second opinion. More likely than not it would just be repating what has allready be done. Besides, if you are worrying about cancer than I am not sure if you will feel better by going through CT or MRI scanning.
If they said that your pancreas was fine on an ultrasound you should believe them. Why would you know better than them? OK; I should not talk cause I am going through the same irrational thinking like "what if they are wrong and I have read all the hooror stories from the Daily Mail about misdiagnosis". Misdiagnosis happens, but it is not common. Remember that.
I have had a fear of something about the pancreas for some months now but you know what. After eating a lot of probiotics and taking pills against stomach gass I have improved considerably, which makes me think that it might just be IBS after all, combined with a mild gastritis. So I try hard not to freak out.
---------- Post added at 13:24 ---------- Previous post was at 13:22 ----------
You have to trust your doctor. You have had 2 very definitive tests. Why put yourself through more tests? Do you honestly think that an MRI is going to make your fear of pancreatic cancer disappear?
True. Docs will normally not recommend cancer tests for patients just because they have health anxiety. Well, not docs in the public health sector.
Thanks for the replies. I did go to different doctor for second opinion, and she did give me referral for scan but she was really reassuring and suggested I speak with my gastroenterologist for follow up and see what he thinks before having the scan. She also said ct scan was better for that region than MRI, so referral is for CT which has made me think twice about having it (radiation risk given how many I've had in past). So I'm not making snap decision on it and feel much calmer since seeing her. I also told her that I need to address the anxiety and we said we would deal with that when I go back to her after seeing gastro.
paranoid-viking
28-11-16, 11:41
Thanks for the replies. I did go to different doctor for second opinion, and she did give me referral for scan but she was really reassuring and suggested I speak with my gastroenterologist for follow up and see what he thinks before having the scan. She also said ct scan was better for that region than MRI, so referral is for CT which has made me think twice about having it (radiation risk given how many I've had in past). So I'm not making snap decision on it and feel much calmer since seeing her. I also told her that I need to address the anxiety and we said we would deal with that when I go back to her after seeing gastro.
Yes, you should definitely not expose yourself to radiation if it is not absolutely nescesarry and and if you do not have alarming symptoms, which it does not sound that you have. It is never 100% curtain that anyone does not have cancer of course; even having no symptoms is also a symptom of cancer(in the early stages)but yo dont see perfectly healthy people flocking to take CT scanning just because of that. And it does not sound to me that you have pancreatic cancer either; there are som many abdominal disorders that are way more common than pan can despite the scaremongering you get from tabloid media and awareness crusraders.
I looked back on my old posts and it seems I have a recurring pancreatic cancer fear that rears it's ugly head every couple of years. So here I am again with very similar 'symptoms' to the past episodes, and I've been trying to rationalise with myself that the symptoms are extremely similar to before and on those occasions nothing ever turned out to be wrong (other than IBS playing up and a bit of gastritis). But of course I have the niggling health anxiety telling me that this time it is different. It started off the back of a few vomiting episodes (same as previously) and started as a burning around the stomach area. Then the burping started and the back pain and the under left rib pain (same as previously). The differences are the back pain is worse, sharper feelings than before as is the under left rib pain. It could very likely be IBS causing trapped wind up under rib and up in my back (and of course it could also be just coincidence and I just have a bad back at the same time - probably made worse hunching over the computer and being anxious!). I caved in to the worries and to GP yesterday and she has referred me for upper abdominal ultrasound ("just to rule out there's not a big lump in there that shouldn't be" were her words - not great for anxiety!!). So I'm having that tomorrow. I've also been referred to a gastroenterologist as well, but that's more because I need to have one in my current state as I've moved since last colonoscopy screening (as I have them every 3 years due to family history of colon cancer and polyps). I think this time the worries came on after a mum at my son's kindy just found out she has breast cancer and she is only 38, a year younger than me. I know pancreatic cancer is extremely unlikely in someone of my age, but like many people on here it's just one of those horrible cancers that we seem to get fixated on probably because it's one of the scariest! I'm staying on this site rather than googling which is an improvement this time, but wish I could have waited out and seen if things just improved on their own rather than putting myself through scans and results!
I’m sorry about your friend- but chances are she will be fine. As for you having pancreatic cancer - or “panic cancer” as someone accidentally (and brilliantly l) called it on here - the chances are so vanishingly small. As you know. On top of which you have reason for heightened anxiety (your friend) and a history of these symptoms. Just be kind to yourself until this blip passes.
In a bad panic again about this and need some perspective/calming down. I had the ultrasound a couple of weeks ago and all was fine. I felt better for a week, although the back pain was still there, and then I had a horrible vomiting attack thing last Friday night after dinner. Worst pain under my ribs I've ever experienced, couldn't even breathe properly, were like spasms that lasted 10 mins then I'd vomit and would all start again. Since then the left sided ache under ribs, intense dull ache in left upper back and soreness along different bits of spine and shoulders has then worsened again. Even wakes me up some nights.
I've got gastroenterologist appointment next Tuesday but have to calm myself down until then, as still fearing pancreatic cancer or something awful. I can't convince myself that the back pain and gastric pain aren't linked and signs of cancer. I don't feel that reassured about clear ultrasound as the radiographer was junior and said she had to get her 'tutor' to check it over at one point. I did have blood tests including lipase for pancreas 2 days ago and haven't heard any issues as yet, so I'm hoping that's reassuring.
I do have terrible trapped wind pains, so it could be that I guess, if wind can really cause that much pain and realistically be in there for 2 weeks straight. I'm almost hoping they say I have coeliacs or something just to have a reason (treatable one) for these pains. This has been a recurring issue every couple of years for quite a while. Can't shake the horrible feeling and fear about not seeing my son grow up. Such a stupid cycle I keep finding myself in, and every time I believe that this time the symptoms are different, so this time it must be actually something horrible!
Hi, my fears about pancreatic cancer are back at their absolute worst at the moment. I’ve had a vomiting episode once each month for the last 4 months, but could generally put it down to a food intolerance or particularly oily or rich food. However for the past month or more I’ve also been getting worsening upper left to middle abdominal fullness/pain and back and rib pain on the left side and in mid and upper back. The feeling is there constantly and doesn’t come and go. I’ve been going to physio each week for the past 6 weeks but hasn’t helped at all.
I had an ultrasound a few weeks ago which was fine apparently and I’ve had 2 lots of blood tests which have also been fine. I saw Gastroenterologist this week who has booked an endoscopy for next Friday to check for any issues, coeliacs and other intolerances. The issue is that I don’t feel like it’s my stomach causing this feeling. I’ve tried but can’t convince myself that it isn’t pancreatic cancer, because of the fact that i feel the back and abdominal issues are related.
I try to convince myself it’s just really bad trapped wind, but now that I’m getting pins and needles/numbness feeling in left upper back, I feel like it’s some sort of compression happening. The doctors (and this should be reassuring and only not seen that way due to the evils of googling) haven’t even mentioned that pancreas is in the realm of what they are considering. I’ve even tried to make myself feel better by thinking well it could be a lymphoma or some other lump in my abdomen, just because at this point anything is better than thinking it’s pancreas. How mad is that?!
I’ve not lost any weight and (despite constant checking of eyes) I don’t have signs of jaundice. I have had low grade temp for the past week, but I haven’t had any nausea. Just wish this rib and back pain would go away!
Hi
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Anxiousamyj
23-11-18, 18:08
I have had rib and back pain for years. It improves when I'm on a good diet and exercise regime. I also went through ultrasound and blood work to check for issues. I didn't have any and neither do you. You are fine, especially considering this has been a fear of yours for years. It's your HA Boogeyman. Hugs to you, as I know it's scary, but the doctor would have found something on ultrasound or in blood work if you were that terribly sick. You are ok.
So just like you said to me, I think your history speaks for itself. You suffered from identical symptoms in 2016 (and before that too?), which were evidently not pancreatic cancer because you are still alive and well; so do you really think this time is different?
Thank you for your replies and for the reassurance. I’m sure the symptoms are a bit different, but it’s reassuring to think they are similar and this is probably one of the things that has kept me (slightly) sane. It’s hard to distinguish between things being different or me just thinking they are! I stupidly scared myself before going to sleep last night as I read things online that I shouldn’t have. I’m away for the weekend so hoping I can take mind off it and enjoy life for a few days!
Well that was short lived. I’m away for a long weekend and thought it would get my mind off things, but my son is sick and I’m feeling worse, so we are heading home early tomorrow. I’m having these really weird fluttering/buzzing feelings in my back and in my stomach. It’s like gas moving around, but more vibration type feeling and has kept up irrespective of going to the toilet etc. In hindsight it’s been doing it a bit before this but it’s quite intense today. Does anyone else experience symptom like that? I’m worried I’ve got something pushing on my intestines!
Well that was short lived. I’m away for a long weekend and thought it would get my mind off things, but my son is sick and I’m feeling worse, so we are heading home early tomorrow. I’m having these really weird fluttering/buzzing feelings in my back and in my stomach. It’s like gas moving around, but more vibration type feeling and has kept up irrespective of going to the toilet etc. In hindsight it’s been doing it a bit before this but it’s quite intense today. Does anyone else experience symptom like that? I’m worried I’ve got something pushing on my intestines!
I'm very similar to you, as I'm constantly worried about PC despite clean tests (blood tests and an ultrasound).
What you're describing kind of sounds like the typical gut issues you get with anxiety. I often get the weird fluttery feeling in my bowels when in nervous, and sometimes I actually feel it through my lower back. I cant remember the actual term for it, but it's your intestines getting ready to evacuate quickly as per the flight response.
Also, it seems.like you've been experiencing a variety of symptoms you attribute to PC for a couple of years, which logically, does not make a lot of sense given that you'd likely be dead by now. Try to take comfort in the fact that you've felt these sensations before and you're still here to tell the tale.
It's a little ironic for me to give this advice given that I'm "positive" I have 3rd/4th stage PC despite clean tests and no hallmark symptoms, but I know this is good advice!
Thanks for the reply and reassuring words.
Today I went to dr, more to just tell her about my anxiety around all these symptoms and to chat it through. I described my pains in back and side and she listened to my chest and back and said she can hear a crackling so has ordered a chest xray to check for fluid on lung. Other than low grade fever, I haven't had any other signs of cold/ flu etc. so she's not sure what would be causing this. She thinks this could very likely be the cause of the back and side pain (obviously the gastroeterologist is looking more into the stomach burning etc. with the endoscopy later this week). I'm happy that she's looking into things more and hopefully this will bring some answers, however of course it has made me feel a bit anxious over what they will find on the x-ray - well the cause of it if they do find fluid anyway! I have kept describing my pain as like being blown up with trapped wind, but now my mind is racing about whether it is actually fluid I'm feeling! Dr also took blood tests again to check for inflammatory markers and autoimmune markers, but also she included blood glucose level in there (not sure for that and slightly worried that if it shows as high this might mean diabetes and then I start thinking back to PC again!!). Hopefully I'll know more by mid week.
It sounds like things are happening and that you will get answers soon. Keep posting with how things are going!
Feeling very nervous about getting X-ray and blood test results tomorrow. The pain in back of rib and under left ribs just keeps getting worse and more constant. I currently fear lung cancer, pancreatic cancer and ovarian cancer, biggest still being pancreatic. My anxiety is sky high and I just want to snap out of it and wake up and everything be ok. I cant get excited about Christmas or even think about things in the new year, as I’m so petrified I will be too sick by then. If I get through this patch with no deadly cause, I think I have to see a psychologist or go on anxiety meds again. I’m just desperate to know that I’m not dying!
Not long now Aussie - this bit immediately before test results is the worst -so it’s OK to be feeling anxious. But you will be fine, after tomorrow things will start to look up. Just be kind to yourself today. Keep venting on here if it helps! And Keep us updated. Xx
Got results today and X-ray was fine but bloods showed high ESR at 35 (inflammatory marker), all other levels fine including blood sugar. Dr still thinks there’s something with lungs, and is thinking autoimmune/inflammatory conditions. Also exploring this due to my toes turning white and numbish today (suggestive of an autoimmune thing). I told her my fear re pancreatic cancer and she said my pancreas is lower down. This gave relief for a moment but didn’t convince me based on things I’ve read re where pain is felt.
She got me to have more bloods to test ESR again, and also test for autoimmune things. She’s referring me to a general physician specialist to look into things further, and also referring for chest CT (for lungs, not looking at pancreas etc). Weird thing was my other inflammatory marker CRP wasn’t raised which she said was unusual. Has made me panic that this must mean cancer (of somewhere!). My back and shoulder are hurting so much and I’m convinced my eyes are slightly yellow in the corners. I didn’t mention that to dr though as thought jaundice would show in bloods.
Also scared that by focusing on pancreas I might be overlooking something else and that I have something that’s spread to my back. I’m driving myself insane!!
Well all in all it sounds good? Anything major with your lungs would’ve shown up on the X-ray.... when do you get your Ct?
Xx
Got results today and X-ray was fine but bloods showed high ESR at 35 (inflammatory marker), all other levels fine including blood sugar. My back and shoulder are hurting so much and I’m convinced my eyes are slightly yellow in the corners. I didn’t mention that to dr though as thought jaundice would show in bloods.
Jaundice does show up in blood work. You would have an elevated bilirubin level. Without an elevated bilirubin level on your blood test, it's impossible to be jaundiced.
A lot of people have a little yellow on the extremities of their eyes so that is normal. I was convinced I had jaundice because of pancreas and that was not true. You would know if you have jaundice.
Thanks for the replies. I will stop checking my eyes!
Had the CT scan of chest today, so my dr should have result from that and updated bloods tomorrow. I’m not due to speak to her until next Wednesday so I’ll be nervous seeing if she calls tomorrow but equally on edge if she doesn’t as just want to know!
I also have my endoscopy tomorrow although I’ve been slightly less concerned about that but we will see. It’s the suspected lung pleurisy thing and the raised ESR which is stressing me out the most right now.
Anyone had high ESR and low CRP before and it been just inflammatory or something minor??
I think I have. I have a feeling the doctor explained one goes up and down quickly and the other one slowly, and that it wasn’t too much of a concern.... but I am wracking my brain!
What has your doctor said to you about it?
The doctor said something similar about one going up slower etc. but I was too stressed to take it in!
I'm in such a state that I'd love to go back to my Dr tomorrow to tell her how anxious I am about this, but I've got my endoscopy so I need to just get that over and done with first. I just feel so detached from my husband and my young son and want to feel normal again.
Believe me, I know JUST how you are feeling. Life on pause, detached etc etc. It’s awful but it WILL pass.
So I have a feeling that raised Esr but low crp is actually less worrying- because if there is a sinister “long term” cause of inflammation then both are raised. Again my medical knowledge is sketchy but I think that’s what the dr told me when I had it.... (I was panicking of course!!)
Perhaps you should go back to your dr and tell her how anxious you are. She should know that. And one more thing. Chest CT scans are VERY sensitive- it is not uncommon for them to show nodules and benign inflammatory changes (I know from bitter experience, hahah); so don’t do what I did and fly into a tail spin if little things like that show up....
Good luck today.
Xxx
Thank you JoJo for the encouraging reply!
Had my endoscopy today and although I need to wait for the biopsy results, the specialist saw me briefly afterwards and said all looked ok and I can see from report that there was nothing wrong that he could see. So that's the stomach area hopefully ruled out in all of this. Specialist also accessed my chest CT result from yesterday as I told him that I'd had that done (it was in same hospital the endoscopy was in). I was pretty sleepy when he was talking to me afterwards, but he said something like the chest CT didn't have anything to worry about. I'll get the official result on that from my GP next week, along with the most up to date blood tests which re-tested ESR, CRP and also autoimmune markers. Hopefully that's the lungs/chest area ruled out as well.
The back pain is getting worse unfortunately but if I've got something inflammatory going on I guess it will be.
Also I've still got the toe thing going on (toes turned white this week and are fairly constantly like that since), very random and not sure if that's linked to the inflammation thing.
Will wait until next week to see what Dr suggests next! Now to get through the weekend without worrying and constantly linking everything back to the pancreas (or some other thing that has got into my spine!!)
I think that all sounds very good! It is so unlikely to be your pancreas. Anyway, and ask your dr if this is right, I expect some of the pancreas can be seen in a chest CT (since it sits right up against it...) But talk to your dr again about your worries - hopefully she can do something to make it better.
I went back to my doctor on the weekend as I was able to get in to see her and have been going mad with anxiety over this. She confirmed the chest CT was all fine (I forgot to ask her whether pancreas would show on that), and also my ESR marker is back down to 7 which hopefully is a good sign (although I'm not sure whether it really means there's nothing bad going on, but it did make me feel better!)
She referred me on to a General Physician, some senior consultant who is apparently very good at getting to the bottom of things. She said that she isn't sure what is going on but is sure it's going to be something autoimmune/inflammatory. This makes sense from the perspective that I seem to have similar 'flare ups' every couple of years, however I still don't understand why it would present itself in such a particular area in my left side, ribs/back etc. and not just be all over my body. Fortunately I am able to get in to see this consultant tomorrow morning. I'm going to just put it all out there as to what I'm concerned about, figure it doesn't matter if he thinks I'm a bit mad.
I've been talking to my mum and my husband about it, but neither of them can understand that when I'm in one of these states I can't just snap out of it. Mum says that I need to focus on other things and just see if things get worse before panicking, but unfortunately my mind doesn't work like that. I need to get the reassurance I need and then I can work on reducing the anxiety and move on. I can often go about 2 years without having a rut like this, but have only ever got out of it by getting the reassurance I need first.
I went back to my doctor on the weekend as I was able to get in to see her and have been going mad with anxiety over this. She confirmed the chest CT was all fine (I forgot to ask her whether pancreas would show on that), and also my ESR marker is back down to 7 which hopefully is a good sign (although I'm not sure whether it really means there's nothing bad going on, but it did make me feel better!)
She referred me on to a General Physician, some senior consultant who is apparently very good at getting to the bottom of things. She said that she isn't sure what is going on but is sure it's going to be something autoimmune/inflammatory. This makes sense from the perspective that I seem to have similar 'flare ups' every couple of years, however I still don't understand why it would present itself in such a particular area in my left side, ribs/back etc. and not just be all over my body. Fortunately I am able to get in to see this consultant tomorrow morning. I'm going to just put it all out there as to what I'm concerned about, figure it doesn't matter if he thinks I'm a bit mad.
I've been talking to my mum and my husband about it, but neither of them can understand that when I'm in one of these states I can't just snap out of it. Mum says that I need to focus on other things and just see if things get worse before panicking, but unfortunately my mind doesn't work like that. I need to get the reassurance I need and then I can work on reducing the anxiety and move on. I can often go about 2 years without having a rut like this, but have only ever got out of it by getting the reassurance I need first.
I totally understand this, and like you my family totally doesn’t!!
I am forever being told just to “focus on other stuff”. If ONLY it was that easy huh?!?
It does sound like the real nasties have been ruled out though. Does your dr know how badly you suffer from anxiety?
I have told the Dr that I get very anxious about my health and this current episode is really making my health anxiety spike. However I didn't go into the fact that I'm actually fearing that I'm dying and thinking of this 24/7. I didn't want her to think that I'm making up my symptoms or imagining them just to get sent for tests. If I survive the current 'deadly' thing I've got whatever that is, I'm comfortable to go back to her and tell her just how anxious I was and seek some advice on preventing it happening
I have told the Dr that I get very anxious about my health and this current episode is really making my health anxiety spike. However I didn't go into the fact that I'm actually fearing that I'm dying and thinking of this 24/7. I didn't want her to think that I'm making up my symptoms or imagining them just to get sent for tests. If I survive the current 'deadly' thing I've got whatever that is, I'm comfortable to go back to her and tell her just how anxious I was and seek some advice on preventing it happening
Yeah I get that. You want to know it’s not deadly before you tackle the anxiety. That is how I feel too! Is pain your main symptom?
Yes it's pain that is the main symptom, well more of a real discomfort as in a constant dull ache in left back and back of ribs. My ribs and spine hurt when I touch them, but the left side dull ache is just always there. In terms of other 'symptoms' I'm still getting burping after any food or drink, shakiness/adrenalin feeling (particularly when I wake up), upper abdominal fullness and occasional sharp pains (oh and my weird white toes, which I'm hoping is the Reynaulds thing and not something relating to diabetes as that is my big fear at the moment that I'll get told I've got diabetes and then I'll presume that's due to pancreas...). What I hate is that just when I feel a bit calmer and that it's all going to be ok, I then get a stabbing pain in the pancreas area or something and then I'm back to square one as it confirms I have 'real' symptoms and not just imagined ones (I know, it doesn't have to mean real symptoms of PC though!)
I’m not saying you don’t have a “real” issue, but I’m sure you are aware how brilliant the brain is at creating symptoms? I speak of course as someone with first hand experience! For people like us it can be so difficult to work out which symptoms actually indicate physical illness and which are due to anxiety!
I had my appointment with the internal medicine consultant this morning. All went fine, he reviewed all my blood and scan results etc. and did a full examination including ECG, neurological (due to me saying I had numb fingers and toes). He didn't think anything untoward going on and only suggested that I have an echocardiagram to rule out that the pleural rub sound the GP thought she heard on my lungs wasn't actually a heart inflammation thing. I did ask him directly about the pancreas and he said ultrasound would have covered that and bloods were all fine so he was reassured on that. He said to mention it to my gastroenterologist when I see him for my follow up next Tuesday. He thinks my back/rib pain sounds like a muscle strain. I really do hope he is right and he probably is (who am I to think I'm more qualified than him to make a judgement!), but I do notice that it feels worse after I've eaten. I'll mention this to the gastroenterologist, maybe it's just because once food is in stomach it causes more pressure on nerves in back or some simple explanation like that! I did notice tonight that if I push on my back up near my shoulders I get gurgly wind like sensations in my stomach area, so perhaps there really is trapped wind right up there like I originally thought, before I went on to think I was dying instead. I'm still concerned, but at least today I haven't felt the sense of doom I have previously. I am speaking to my GP on the phone tomorrow as she wanted me to give her an update, so I'll feel better after that as well.
A bit of an update from me. Saw my gastroenterologist yesterday for results after the endoscopy. All fine other than showed I was lactose intolerant. Not surprised as expected probably was, will be a fairly easy fix, just means I need to not have half my diet as dairy now which is not a bad thing! So although the lactose thing could be causing more gas/trapped wind, the doctor said that wouldn't be the reason for the constant rib and back pain.
Went back to my GP today and she is still puzzled by my symptoms and is still concerned that she hears a pleural rub sound when she listens to my back rib area. She thinks that it could be an inflammatory condition given that I get low fevers on and off. She's sending me to see a respiratory specialist next week to check their thoughts on whether there really is anything going on in the chest wall area like fluid which needs to be drained. I asked her again about the abdomen (didn't specifically say the pancreas) and she was going to send me for another ultrasound, but then decided not to as she is sure it's chest wall related not abdomen. Just before I left she asked if any painkillers work on it and if it was interrupting my sleep. I said that painkillers don't stop the pain, but that the pain was just a dull ache, but that it does sometimes wake me up. So then she decided that she is sending me for a nuclear bone scan "to rule out any hot spots". Well I'm happy that she's being diligent but of course I'm rather petrified about fact she is now looking at ruling out sinister things - ridiculous really given that I am the one wanting tests to rule out things, but scared when she suggests them!
Sounds like you are in good hands, that is the main thing. And how are you doing emotionally?
Thanks JoJo. I’m stressed about it but probably not as bad as I have been as I’m trying to keep my mind off it. My mother in-law is over from the UK for all of December so I’m keeping busy entertaining her, plus it’s my son’s last week of kindergarten this week so I’m focusing on things with that too. When I stop and think about it I panic, worst bit is trying to juggle all the appointments and scans etc ahead of Christmas. I really want answers if there are any before Christmas so that I don’t have this hanging over me! I still have an underlying lurking panic that it could still be pancreas related, but I’m not as panicked about the other potential things it could be as I feel I can deal with those if I have to!
When do you get your results?
Thursday. Tomorrow!! (Arrrgghhhh!!).
It’s not your pancreas. None of it fits with that, and like you say if it is “something”, you will deal with it. MIL for a whole month! Do you have a good relationship with her?
Weirdest thing just happened, just heading to bed (at 10.30pm here) and I have 2 missed calls then a voicemail from my GP. She then rings again, by then I’m thinking how weird and also slightly concerned! She rang to say she’s heading off on holiday for 2 weeks in the morning and wanted to make sure I had booked in my specialist appointment and bone scan. I’m then panicking thinking geez she must really be worried! But she said she just wanted to check as the specialist may say I don’t need the scan anyway so it’s good I’m seeing him before the scan. She also added though if my pain gets worse I should go straight to the hospital and to not be fobbed off. Lovely caring doctor, she must have a stressful life though if she constantly takes home the worries of every patient (enough to randomly call them after 10pm!). I’m thinking she either knows that I’m anxious so wants to ensure I get sorted and some answers, or she has no idea how anxious I am or she wouldn’t have called and caused me to panic and wonder about what she thinks is wrong with me!
What a lovely doctor! And you will get to the bottom of it very soon. But rest assured : it’s NOT your pancreas!!
Another update and a vent from me. Pain in back and back ribs still bad, and weird abdominal fluttering and bloating type feelings. Last night I woke up after only being asleep about half hour and I’m not sure if it was real symptoms I was feeling or am anxiety type of attack but it was horrible. I had burning under my ribs, pulsating weird fluttering feelings under let rib and my heart was racing. Took about 2 hours to get back to sleep. I went back to GP yesterday, same surgery but different doctor as mine is on holiday. She read all my notes and listened about my symptoms and said she is very reasssured that it is nothing needing further investigation. She’s very calming and is one of the practice heads, very experienced. She asked me what was it that I was most scared about, so I told her it was pancreatic tumour or lymphoma. She gave me a referral for an abdominal MRI but said it was for my benefit not hers. She also gave me details of a psychologist who specialises in gut/ IBS patients, as I said I recognise if tests all fine I need to address the anxiety and not focusing on the pain. So next steps are for me to have the MRI, still see the respiratory specialist on Wednesday to look into the lung thing my other GP was looking at, then get results later this week and go from there. I really want this to be something minor/treatable or just something perpetuated by anxiety. But I just can’t be convinced at this point that such constant and ongoing pain is just nothing!
Hypomania, will hopefully have the MRI in next couple of days, calling to book first thing tomorrow.
Good luck with the MRI Aussie - and I hope when you get a clear result you won’t move straight on to something even more deadly like ALS (as I did!!)
Xx keep us posted xx
Thanks JoJo, I’m terrified but desperate to get it done at the same time. I just have to decide if I still want to go ahead with the chest wall bone scan that my usual GP suggested. I do have really constant stinging pain in my spine and ribs so there may be a need to look into that. But I don’t really want the radiation from that if I can avoid it, and hoping if I get good news on the MRI that the other pains may go away!
MRI booked for tomorrow afternoon, and follow up with GP to get results on Thursday morning. Glad to be booked but scared. This will be my 4th MRI (in a number of years) so not worried about procedure, just the result!
I think thing worrying me most is fact that the back pain is worse after eating. I’m not aware of anything else other than pancreas and gall bladder that cause this type of pain (and can’t be gallbladder as mine was removed), but then why would I given I’m not a doctor so I’m only going by google! I told my gastroenterologist and GP’s about this symptom and none seem concerned (or offered any explanation though).
Good luck! Thinking of you!
Xxx
---------- Post added at 07:38 ---------- Previous post was at 07:19 ----------
And also there is no need to try to second guess the meaning of your symptoms any more. Your doctor’s are not concerned- which is a good sign - and you will know for sure in a few days....
Thank you JoJo, I know it is definitely pointless second guessing the symptoms - if they don't ring alarm bells to all the different doctors I've seen then I'm certainly not going to be able come up with an explanation myself!
I hope you're managing to keep your current ALS fears at bay!
Thank you JoJo, I know it is definitely pointless second guessing the symptoms - if they don't ring alarm bells to all the different doctors I've seen then I'm certainly not going to be able come up with an explanation myself!
I hope you're managing to keep your current ALS fears at bay!
Haha - not really. They only subside a little bit when I think I have a brain tumour!!
ScaredBBOY
17-12-18, 22:00
In a big Rut as well and in a big fear of PC I thought after my Ultrasound I would be fine and reassured but my pain is still here .. I’m in constant fear and with no answer and I’m breaking down emotionally don’t know if I posted on this thread and if I haven’t I’m sorry to add on another worrier with no solutions.. everything on the net tells its PC my symptoms are on and off but mostly on
Back pain started as upper right near shoulder in between shoulder blades but now is all over my back sometimes walking eases the pain but it later appears some where else in my back my stomach I don’t have pain but feel full at times and I’m burping a lot through out the day it doesn’t matter if I eat or not
Other symptoms are high Billirubin but I do have Gilbert’s
And I think the corner of my eyes are yellow
Sorry to vent but figured speaking to ppl helps as I don’t have anyone else who can relate I feel alone
In a big Rut as well and in a big fear of PC I thought after my Ultrasound I would be fine and reassured but my pain is still here .. I’m in constant fear and with no answer and I’m breaking down emotionally don’t know if I posted on this thread and if I haven’t I’m sorry to add on another worrier with no solutions.. everything on the net tells its PC my symptoms are on and off but mostly on
Back pain started as upper right near shoulder in between shoulder blades but now is all over my back sometimes walking eases the pain but it later appears some where else in my back my stomach I don’t have pain but feel full at times and I’m burping a lot through out the day it doesn’t matter if I eat or not
Other symptoms are high Billirubin but I do have Gilbert’s
And I think the corner of my eyes are yellow
Sorry to vent but figured speaking to ppl helps as I don’t have anyone else who can relate I feel alone
I also have Gilberts. When I am under stress and my Gilbert levels are up my eyes also go a slight yellow. It's nothing to worry about.
As for your back pain, I'd hazard a guess at it being muscle tension. When you get anxious you tense up, especially in the back and shoulder area. I'd highly recommend trying some relaxation meditation (Headspace or something similar) and maybe getting a massage.
Exercise is also a good thing for your back. See if that helps :)
ScaredBBOY
17-12-18, 22:52
Thanks for your reply James Back pain and weight loss has got me so down at the moment 18 pounds in 2 months is a lot starting to gain my wieght back these past few weeks tho I read your post from a year ago seems like you were going through something similar
Yes I was.
Honestly, meditation helped loads - as did exercise. There is so much tension in your back when you're anxious it's crazy.
There’s definitely a lot of us on here that have been through similar thing and had similar fears. I wish I had never googled a few years back when I had same sort of pains, would prefer not to know anything about the pancreas!
Tension I’m sure makes any of the symptoms seem worse. I have caught myself in weird tense positions, such as sitting in hunched an tummy is all squished, plus lying in bed and having back all arched in uncomfortable tense position. Sometimes it helps to take some big deep breaths to try and relax it. I have been going to Physio and it feels better while he is working on me but unfortunately hurts as soon as I sit back up. If it is just anxiety and tension, I must be wound up so tight that it will take quite a while to fix it!
Had my MRI today. The technician asked why I was having it rather than a CT as he said that MRI is usually used as a more focused scan on particular area rather than a screening type test. I explained that Dr said it was just as accurate and that we had preferred not to have the radiation of the CT given I was happy to pay the extra for the MRI. I said just focus around my pancreas and left side please! I'll get the results from GP on Thursday morning. I also had lung function test today that GP had sent me off for based on symptoms being around the chest area. I go to see the respiratory specialist tomorrow for those results and to discuss whether he thinks on review of my tests and symptoms if it's anything to do with my chest, nothing to do with it or just an incidental aside. I'm not sure whether to go ahead with the bone scan on Thursday - normal GP recommended it, but the practice head who I saw on the weekend said not to bother. Thinking I might defer at least until after I've got the MRI results and see how I feel then. Hoping to also get opinion of the respiratory specialist tomorrow as he's apparently also a general internal medicine consultant so may have a broader view. Also had bloods done again today so I'll get those results on Thursday from GP - this included full blood count, kidneys, liver, blood sugar and a whole heap of inflammatory and autoimmune markers again. GP wanted to review them again. These tests are getting exhausting, but almost there (I hope!)
ScaredBBOY
19-12-18, 12:57
Feeling anxious this morning last night was a rough night I’ve been getting rib pain that wakes me up it last for about 1 to five minutes then I move and it goes away it comes on both sides but mostly left I fear nevmxt it will be stomach pain and then it’ll be too late for me I try to rationale with it but it’s so hard when the symptoms are real
I go to my new Gp today hopefully she can shed some light did my blood test for them last week I had insurance change so I got to get a heap of new doctors who don’t know me well
Had my MRI today. The technician asked why I was having it rather than a CT as he said that MRI is usually used as a more focused scan on particular area rather than a screening type test. I explained that Dr said it was just as accurate and that we had preferred not to have the radiation of the CT given I was happy to pay the extra for the MRI. I said just focus around my pancreas and left side please! I'll get the results from GP on Thursday morning. I also had lung function test today that GP had sent me off for based on symptoms being around the chest area. I go to see the respiratory specialist tomorrow for those results and to discuss whether he thinks on review of my tests and symptoms if it's anything to do with my chest, nothing to do with it or just an incidental aside. I'm not sure whether to go ahead with the bone scan on Thursday - normal GP recommended it, but the practice head who I saw on the weekend said not to bother. Thinking I might defer at least until after I've got the MRI results and see how I feel then. Hoping to also get opinion of the respiratory specialist tomorrow as he's apparently also a general internal medicine consultant so may have a broader view. Also had bloods done again today so I'll get those results on Thursday from GP - this included full blood count, kidneys, liver, blood sugar and a whole heap of inflammatory and autoimmune markers again. GP wanted to review them again. These tests are getting exhausting, but almost there (I hope!)
Keep us posted. Fingers crossed for you!
Thanks Hypomania!
An update from me - the MRI was all clear, hooray!! So this puts the pancreatic cancer obsession officially to rest. I saw the respiratory specialist yesterday as well and he has given my lungs the all clear as well. Like others here, the specialist on reviewing the CT did actually find a couple of very tiny lung nodules, however the specialist said it wasn't even reported on the findings and he was not concerned at all, so that's good enough for me. He has ruled out anything regarding my chest area. One thing that did show on my CT scan was I do have a very high splenic flexure bend and it was quite prominent, which explains why I suffer from so much pain in my left side and into back area when I get constipated or full of gas (not helped by fact that until a week or so ago I didn't know I was lactose intolerant until that was found on endoscopy biopsy).
Only other thing, which is probably quite relevant to my various symptoms, is that the specialist yesterday on reviewing my blood tests, confirmed that one of my autoimmune markers tested positive. So I definitely have something going on in my body which causes this inflammation and pain, and also explains the Reynauds syndrome (white toes), finger and feet tingles etc. Also explains why I get these 'flare ups' as I call them, which start with pain and then perpetuate into health anxiety about something deadly.
There were definitely moments over the last 2 or 3 months where I was absolutely convinced that my pancreas was my issue. Symptoms matched everything I had read - and just like my similar episodes in 2014 and 2016, it has again gone to show the brain can make you 'feel' all the text book symptoms you've read about.
Thank you for the support through this very rough anxiety patch!
ScaredBBOY
20-12-18, 19:27
Great news I’m excited for you I read your post this morning and it excited me and for a moment I felt better like I was the one with the clear MRI .....
Today had been a bad day for me my ribs are in pain but it’s like upper rib pain right by Under my arm pit and it is tender to touch them I also have this awful taste in my mouth as my mouth is really dry had some blood work done yesterday and I’m hoping all is clear they taste me for diabetes and liver function they are sending me for another mri and a ct scan today so nervous and the bitter taste won’t go away back pain has I guess subsided some but the rib pain intensified I hope like you I find some answer and pray it’s not the answer I fear
---------- Post added at 14:27 ---------- Previous post was at 14:24 ----------
Sorry not an mri they are sending me for another ultrasound these are all new doctor as I have change my insurance these new doctor work fast tho sending me for all these test even set me up for a upper endoscopy in February don’t know if all these test are a good sign or a bad one
Hooray Aussie-
Wonderful news! And also some explanation for your symptoms, which is great splenic flexure makes a lot of sense I think....
Hope you have a good day! Xxx
blueingreen
20-12-18, 21:38
Great news for you!! I, like Scaredbboy, also feel relief for myself since I've had some similar symptoms as you. I hope your mind continues to feel at ease and doesn't jump to another thing as we are all prone to do. :)
Just when I thought I was through this rough patch! I had another awful vomiting episode after eating dinner last night, felt the horrible blown up feeling to the point of not being able to breathe properly and in intense pain under ribs. I made my husband call the ambulance as I had only just been to the Allergist earlier yesterday and she said what I described sounded like allergic reaction and she prescribed me an EpiPen to use if I had another episode after food. I hadn't gone and got it yet from the chemist and was panicking then that I may have in fact been having allergic reaction. They gave me pain relief and took me into A&E. Had blood tests done, was feeling pretty great by then as so relieved that the episode had passed. Then the doctor came in to tell my that my lipase (pancreatic enzyme) level was absolutely through the roof at 4800!! After all this time of being told my pains were nothing to do with my pancreas! It was the first time I'd gone into A&E with it after an attack, last time I'd had blood tests it had been roughly a week later at the GP's and by then the levels would have been probably back to normal, hence reason that it never got picked up. I had ultrasound back at end of October and MRI of abdomen in Dec, both of which were clear, so I thought I was just going mad.
I've been sent home from hospital as feel relatively ok now and have been able to keep down food and drink. The general surgeon who saw me said he wants to see me as outpatient at his offices this week and he recommends I have an MRCP scan (although he did say the MRI I had should have been sufficient). He thinks one explanation could be something called Sphincter of Oddi syndrome which can occur in people like me who've had their gall bladder out - basically it's a disorder where the valve in bile duct shuts off and makes everything back up causing pain and the raised enzymes. As you can imagine I'm beside myself, and although this thing he suggests, or pancreatitis are scary I just want to know I've got anything except cancer!! Surely after all the tests, after all the symptoms over this time, a tumour would have been picked up and it wouldn't be so intermittent - that's what I'm telling myself anyway!
Has anyone heard of lipase levels being so ridiculously high?! I was in shock.
The specialist was able to see me today thank goodness as he had a cancellation. I've been ridiculously anxious about this since Friday night's pancreatitis episode and off the charts lipase blood test. He looked through all my previous scans including the October ultrasound and December MRI and showed me on each one on the computer what he was looking at and that pancreas was all fine, no tumours etc. I am of course very relieved to have had this reviewed, he said we may never find out what caused the pancreatitis attack. He did say it could be autoimmune pancreatitis perhaps, but is referring me on to a gastroenterologist for further review. The gastroenterologist may want to do the MRCP scan but it may be more focusing on what may have triggered it and working out diet to try and avoid it recurring. I'm also getting referred to rheumatologist who may be able to shed some light.
Morning (here anyway) all!
Don't mean to hijack the thread but seems like I have a lot of similar people to me in this thread so hoping we can discuss and hopefully put my mind at ease. Great news the scan came back clear as the sky on a summers day! Congrats.
As for me, I'm in the middle of another pancreatic cancer worry (had it once before, 4 years ago). Just before Christmas, on a Sunday evening and randomly, I started to have stomach pains (like food poisoning). These continued the next day, I was also shivering and took the day off work. I wasn’t sick, my stools were fine and the next day the pain went down. However, since then the following symptoms have continued: acid reflux (I was diagnosed with this 4 years ago and have dealt with it on and off since then), sharp pains under both ribs, consistent pain/pressure under both ribs at different times, wind (burping and flatulence), stomach discomfort, some upper and lower back pain (mainly left sided) and burning heartburn – all these, on and off for about a month now.
I am 30 years old, male, 5 foot 9 and 14 stone 7 pounds and as the forum suggests, I suffer with health anxiety. My stools and urine have been fine, my levels of energy are normal. I started taking 20mg Omeprazole when this started, now on 40mg Omeprazole (since last Tuesday). Seen one GP, she wasn’t worried, felt tummy and said nothing I said made her think of cancer but I am worried about pancreatic cancer. Can you give me any words or advice?
LDHarv
My husband has had a couple bouts of stomach upset just like you describe. He is much older than you. One came on last Christmas after eating rich foods and drinking more alcohol than usual. Once he eats healthier he feels much better. You didn’t mention what you ate when it started? Sometimes once those stomach acids get churned it takes a while to calm down.
BrightPhoenix
21-01-19, 19:04
Thanks for helping me with my sinus worry, good to hear you're still chugging away at your challenges Aussie11, and good to see at the very least it's not the worst. You probably have to deal with something but it sounds like you at least have the mental preparation to deal with whatever - you've already gone through a lot.
Wishing you well - stay strong!
So sorry you’ve been having a scary time of it again Aussie. It sounds like something is going on, but that it certainly ISNT cancer, and that it IS being properly looked at now. I hope they can sort you out soon, because repeated episodes of pain like that are awful. You poor thing. Are you pain free between episodes?
LDHarv
My husband has had a couple bouts of stomach upset just like you describe. He is much older than you. One came on last Christmas after eating rich foods and drinking more alcohol than usual. Once he eats healthier he feels much better. You didn’t mention what you ate when it started? Sometimes once those stomach acids get churned it takes a while to calm down.
Well, I'd just had a Sunday roast but find it hard to beleive that a simple roast is causing this! The stitch/cramp feeling under my ribs, especially left side now, hasn't stopped over the past few days really.
Forgot to say, thanks for the reply Reddog :)
Thanks for the replies.
JoJo, most the time I've just got the bloated achey stomach, and particularly after eating (I'm hardly eating anything at the moment as too worried to!), along with burping and reflux type feelings. I've only had 2 of the real 'attack' type episodes, which is the horrific can't even move sort of pain, but thankfully the rest of the time it's just these general symptoms (which is why I accepted previously that these must be from IBS, trapped wind etc etc).
Apparently it might be a 2 month wait to see the gastroenterologist the other specialist wanted me to see. Hopefully I can get in sooner, otherwise I'll go back to same gastro who did my endoscopy last year.
LDHarv, have you had your gallbladder looked at or could it be a gastritis sort of thing, perhaps it was a bug you had as you said you were shivery etc. Maybe it was a virus that then left you with an irritated stomach.
Hello Aussie,
Hope you are well.
Nothing looked at yet, GP was very clear that she thought it was nothing more than gastro reflux and upping the omeprazole would help - the reflux has gone done a bit to be honest, though still burping and still get it. I paid for some private blood tests which came back perfect, specially around the liver function (see other posts) and I had some blood tests in September, including blood cell count and they were spot on as well.
Only thing my GP has done really has felt my tummy and she said nothing I said suggested cancer in the slightest. Still can't shake the worry, still having pains (both dull and sharp), especially under my left ribs and on/off back ache (upper). I also spoke to another GP on a video app thing, he was extremely good and very clear in his thoughts. Said he thought it was gastro and he backed what my GP was saying. Maybe take a h.pyroi (spelling?) test and if it continues a camera down the throat but that was it.
Just had a bad episode of worry this morning due to going to the toilet (sharp pain in lower ab) and then have ragged but brown stools. GP's don't seem worried at all. How you are you?
LDHarv, sounds like if it keeps going for you then the h-pylori test wouldn't be a bad idea and perhaps the endoscopy. I had those done in November, had actually hoped they'd found something minor through that but all showed fine. I wouldn't worry too much about the stool stuff as so many things can affect that, particularly when you're anxious or stressed about what's going on, so it's a bit of a vicious cycle.
I was feeling pretty good yesterday so thought I might be back on the mend after the attack (although still anxious about what actually caused it). But then last night I had achey bloated stomach again after eating, nothing too painful but just uncomfortable. The only thing which is keeping me sane whilst I await further tests or Dr review is the fact that the CT and MRI showed no masses in pancreas, so I'm relying on that being accurate! My gastroenterologist appointment is booked for 14th March so a while to wait unfortunately.
This is really the first time I've ever actually had something 'real' show on a test (ie. the high lipase levels) - in one way I think I'm dealing with it better than when I've been in a panic over 'imagined' illnesses. There's still that lurking fear about sinister cause which is probably more the health anxiety kicking in than reality though.
Back again with the latest update and anxiety over this. I was fortunate to get my appointment with gastroenterologist changed from 14th March to today. He reviewed my whole story, symptoms, tests etc and concluded that it’s probably recurrent acute pancreatitis, of unknown cause. He is referring me for endoscopic ultrasound with a pancreas specialist and I will have it done next week. Will be a relief to have it done, after such a long saga. Main thing that’s worried me is that he’s also doing a whole new set of bloods, very thorough, however he’s included the CA19-9 pancreas tumour marker in there. Of course this has sent me into a panic. I’d felt very reassured in the appointment until I saw that on the blood request! Worried it will be raised, and also conscious that it can sometimes be raised by other things but of course if they say it’s raised I’ll still assume the worst!
Aussie,
I have followed your thread as I have many symptoms similar to you except for the acute attacks that eventually led you to hospital. I too fear pancreatic cancer. Looking at your thread and tests though they seem to have really ruled it out. My understanding is that marker test is not specific for cancer but would also be elevated in cases of inflammation.
Waiting for tests and results is so hard. I am waiting for results also. Best wishes to you next week for the tests and I hope you get good news. Hope the anxiety isn't too bad?
Hi Beckett, yes the waiting is the worst isn't it, allows too much time to think of bad things! I hope you don't have to wait too much longer for your results and you can get the reassurance you need! I haven't heard from the hospital about when my EUS is supposed to be next week as yet. I had the blood tests done yesterday morning and also got sent for another set today by my allergist as I had a follow up with her (unrelated) but she is also specialist in autoimmune things so wanted to check for the autoimmune causes of pancreatitis. Logic tells me that anything that could cause this many symptoms would be noticeable on the scans I've had. However I hate that there has been no reason found as yet for the cause!
I totally understand.....the not knowing creates a void into which we can project our deepest fears. It is really tough. Great though that you are being well looked after and the autoimmune tests will hopefully bring you some answers.
My whole life at the moment seems to be consumed with waiting for test results!
So an update on where I'm at - I'm still waiting on the blood tests ordered by gastroenterologist (which included the nasty tumour marker one) but I did get the results for my other tests which were general ones and also autoimmune markers. It was negative for the one which indicates autoimmune pancreatitis. This is partly good, but also a bit frustrating as that seemed to me like a possibility that wasn't as sinister as my fear of a tumour!
Having endoscopic ultrasound on Friday or next Tuesday, just waiting to have it confirmed. Very scared of what they might find, just taking comfort in the fact my CT and MRI both said pancreas was normal in Nov and Dec last year (my GP gave me a copy of the results and this weirdly makes me feel better being able to read it on there myself).
My son just started school and I hate that I'm just constantly thinking about what would happen if this did turn out to be something awful. My biggest fear is not being here for him, it's just too horrible to think about!
Good luck with the next test Aussie. I know that fear of leaving your child too well. It is my biggest fear too. It is a hard one to manage. I hope you get good good news soon.
Thanks Beckett!
As I'm in such absolute panic about this, I'm grasping at anything to try and convince myself that they're going to find something awful - so I was thinking what are the chances of actually having the deadly illness that has been the main centre of all your health anxiety for 10 years?! I'm trying to think logically and that would seem very very unlikely. Add to that the likelihood of getting pancreatic cancer at 39 years old (apparently there's about 1 case in my state in my age group per year), and on top of that it not being seen on a CT scan of chest in Nov which the report says showed the pancreas as normal, and MRI of abdomen in Dec which showed the pancreas as normal, plus a clear ultrasound in Nov as well... I hoping that likelihood is zero!
Aussie, with all those clear scans it just couldn't be possible at this stage. Am thinking of you, I hope you get the test over with as soon as possible.
Tomorrow is the day! Endoscopic ultrasound booked for tomorrow afternoon. They said they should have results by Tuesday. I’m not sure if he will give me any indication afterwards, with previous endoscopies dr has always said straight if looked ok (but I’ve never had this type before). I feel like everything is in limbo until I find out!
So glad to hear you are getting the test tomorrow. My very best wishes.
EUS went well! Dr said nothing untoward seen and there was nothing to biopsy. He is going to treat it as Sphincter of Oddi Dysfunction, with medication (Amitriptyline which I’m already on, plus another new one) to try and prevent the spasms. Will go for review in a month. Just so relieved there were no tumours and no evidence of chronic pancreatitis at this point. I will need to stick with strict diet too to try avoid any triggers. I hope the rib and back pain now calms down as I know the anxiety would have been making it worse. I was so anxious that my heart was pounding and doing all sorts of weird fast beats - the pre-op nurse said it was quite irregular, I was worried they were going to say it wasn’t safe to do the anaesthetic!
Oh Aussie, I am so happy for you. That is such good news. I hope you can have a really good rest now and can finally relax after all the stress.
Please keep us posted on how you are getting on.
Back posting about this after a few months fairly anxiety free! So I no longer fear pancreatic cancer thank goodness, but this thoracic and left sided rib pain is really getting me down still. I’ve been able to shrug it off as just some random inflammatory/pain thing for the most part, and have done fairly well in not trying to put it down to something deadly!
It’s there all the time now, for the past month or so, so I mentioned it to my HP and she wants me to have nuclear bone scan. She had suggested it last year but then we went off on different tangent and it seemed to get a bit better for a while. Logically I’m thinking if I had some of this pain 6 months ago, if it was something bad then it is unlikely to have on and off days in that time. However scanxiety has set in as I’m off to have the scan today. I get the results on Friday morning. Just having a vent here. On one hand I’m annoyed with myself for not having the scan back in November when it was first suggested, but on the other hand I’m also annoyed with myself for catastrophising again and not just putting this down to a muscular/general back pain issue!
Hello! I noticed you hadn’t been on here and assumed you were feeling better. So glad you were! I agree with you that if your pain hasn’t worsened in 6 months it is unlikely to be sinister- but scanxiety sucks. Thank goodness you don’t have long to wait. Roll on Friday!
Hi again Jojo, thanks for the message! Yes I was doing so well in stopping the negative thoughts creeping in, pity it couldn’t last. Had the test earlier, now worrying as they did it then the technician said she would just check with the radiologist if he was happy with the images. She then came back and said they wanted to do some more. On the account afterwards I could see that they did the bone scan and then an additional nuclear CT (which I googled and says this is done when they need to see more local detail or if tissue etc is hindering their view of the bones). Sent me into a panic. Fortunately I’ve just found out my son’s vaccination appointment tomorrow is with my normal GP. She’s very helpful so won’t mind me asking if she has my results yet. Will mean I don’t have to suffer scanxiety until Friday!
Myofascial pain can be constant and excruciating, particularly when it involves nerve endings as well. I'm sorry you've had to endure the angst of a bone scan and I hope you soon get some news to stop the worry.
The wait worry is terrible and also unavoidable? Just thank goodness it isn’t long. I find exercise helpful, both as a distraction and reminding myself I am “healthy”. And also it can produce strong bodily sensations that are not the *scary* ones!!
Thanks Pulisa and Jojo, encouraging advice as always!
Feeling ridiculous again about my negative thought pattern - found out this evening my nuclear bone scan results were normal! Thank goodness. Today my rib pain was so bad, I was sure something had to be going on! Well clearly it’s not normal to feel pain like this, but it’s just pain...not cancer!
Hooray!!!! Wonderful news. I’ve never been to a scan or test and NOT read something awful into what the radiographer says or does. We (HAers) all do it. But mainly just: YAY!!!
WiseMonkey
04-12-19, 07:16
I've been following this thread and am interested that most of the symptoms and test results for Aussie11 have basically lead to a result of 'something autoimmune and/or something which can't be explained.
When you're dealing with autoimmune issues, it's very easy to get the 'run around' as only specialists really know much about autoimmune stuff. I had my appointment with a gastro specialist today to talk about my stomach issues, slightly raised lipase and liver levels.
He reviewed my ultrasound results, which were all clear, and is sending me for a MRCP (a specialist MRI which looks at the pancreatic system, liver, bile ducts, gallbladder and liver). He also mentioned autoimmune pancreatitis, which shows up better on an MRI than an ultrasound as it shows inflammation. He doesn't think there's anything else more sinister going on with the pancreas. He also sent me off for a battery of blood tests including ANA's, ENA's and a few others). My MRI is on Friday, so it will be interesting to see if anything different turns up.
As some of you know, I have a few autoimmune issues going on and have had a few gastoscopies over the years to investigate my intermittent stomach complaints. All of these have been fine. Dealing with autoimmune issues is often endless and stressful, as they're complex and often require specific treatment. Sometimes you can have an autoimmune condition but nothing shows up in blood tests or scans. Other times levels can be raised in blood tests for no apparent reason other than inflammation somewhere in the body! It's very easy to become anxious and stressed, so I really understand those who have this.
Can’t believe I’m experiencing these same symptoms again that I’ve complained about over the course of 6 years in this thread. Of course it’s partly reassuring to re-read over my previous posts about previous symptoms, as I know they turned out to be nothing of significance then so why should that be any different now. But the health anxiety sufferer in me says, but what if this time it is?... This time my flare up of health anxiety started about 2 months ago with breast worries and tight chest feeling which I feared was my lungs. The breast issues turned out fine, chest tightness is still there and Dr is treating as allergies, asthma and inflammation, so I’m on a few different medications (Dr did send me for chest X-ray and I get results on Monday for that). But somewhere along the line over the last month or so I have also started getting digestive/abdominal pains and symptoms, burping, trapped wind, under rib pain, as well as shoulder, back and rib pain. Those were the symptoms I had in these previous posts when I feared pancreatic cancer. Start of last year I did have a pancreatitis attack so I wasn’t completely mad thinking something was going on with pancreas but on investigation (CT, MRI and Endoscopic Ultrasound all showed nothing sinister.
I’m not sure this time it’s come on because of anxiety over these other things, just a flare up of IBS and inflammation (I do have a vague connective tissue disorder that I see Rheumatologist for), or these things plus fact I had a friend make off cuff remark about friend of friend dying and it sent me into my own panic.
Bloods were all fine oh and I also had a brain and whole spine (including thoracic area where my pain is) MRI only a few months ago which was fine. Which I sort of assume would have seen if there was anything in that area that shouldn’t have been. I have follow up re the chest tightness and X-ray with my GP on Monday, feel like she will think I’m insane if I now say oh the chest really isn’t the issue it’s my abdomen now can you check that out too?! And before this pain all started I was just about to make appointment with a therapist to tackle the health anxiety, but it’s a catch 22, I don’t feel like I can believe that this is all anxiety until the pain and symptoms stop, but they might not stop unless I tackle the anxiety making my brain fixate on them!! The joys of health anxiety!!
Paradise10
12-12-20, 11:28
You really need to tackle the anxiety...
I have the same symptoms as you on the left side, but I have had no tests or spoken with my doctor. I have a telephone appointment next Thursday. In the meantime I am telling myself its just anxiety and I carry on. I am trying to stop the thoughts expanding to more thoughts about it. Yes I'm worried but I am also carrying on. I have cbt starting next week and have also just increased anxiety medication. You really need to work on the anxiety now, keep telling yourself you have had tests and they were fine. Nothing has changed in a few months. Stay away from Google and other health sites.
Very wise advice, Paradise10. There will never be sufficient tests/consultations to appease HA.
Time to challenge your HA and go for the therapy option, Aussie11..no matter how much you are worrying about your current symptoms.
Paradise10
12-12-20, 18:01
I read a sticky at the top of here and it really resonated with me.
If I am now worried about a health concern, I ask my family what they think, (they love me, they don't want anything to happen to me so I trust them) if they think I should see a doctor then I will make an appointment. I trust my doctor... whats the point of seeing them if you don't trust them. If they say I'm fine, then I'm fine and everything It comes up again I just say to myself the doctor said I'm fine and I move on. Eventually you see that.
I haven't googled for over a week now and while its hard (as any addiction is to give up) I've learnt that Google is not a doctor and will never reassure me, only leave me worrying about more things.
You've got this Aussie just keep telling yourself the truth that you are fine.
Thank you for the positive comments. I see GP tomorrow so will ask her for the contact details of the hypnotherapist person I have been meaning to see. I really hope it helps, I feel like I just waste so much time thinking and worrying about health and deadly diseases that it takes me away from enjoying the present.
That's a very good decision to make and I'm sure your GP will agree. Getting some control back will really improve the quality of your life . It's miserable when you're always on the alert for the next sinister illness...That's not living life as it should be when you are healthy.
My symptoms have continued to get worse over the past few weeks. I've done ok from an anxiety point of view and managed not to spiral too badly, mostly through reminding myself that I've had similar symptoms in the past and it all turned out ok irrespective of how convinced I was of a deadly cause. I saw my GP last week and we agreed to switch me from Amitriptyline (only on low dose for pain, not as an anti anxiety) to Cymbalta, as a way of getting onto something that may do a double job of addressing the pain (my Rheumatologist had suggested it given I have a connective tissue disorder / fibromyalgia), as well as anxiety. Over the past week I've gone down to even lower dose of Amitriptyline and the next week I take nothing to clear out my system before starting the new meds. I felt good to make the plan with the GP to address the anxiety (we also talked about hypnotherapy and psychologists that she recommended). However I went back to the GP today given the pain was even worse and the weird vibration pulsing feeling in my abdomen worse over past week. GP said that I have a very prominent abdominal pulse which doesn't worry her as such, she just wondered whether I've just become very conscious of it. But she also said she can hear the vibrations (not related to pulse) that I mentioned, but she said it could potentially just be that my digestive system is extremely slow at the moment and making a lot of noise and movement as stuff moves through it. She is sending me for an abdominal MRI (which I'm having tomorrow) so we can draw a line in the sand - as she said that in the short term I may continue to have worsening back and rib pain whilst the Amitriptyline leaves my system and the new meds start to take effect, I could get worse abdominal/tummy upset as I get used to the new meds. Therefore it was her view (and mine) that it is best to be sure there is nothing worrying causing the symptoms before we just put them down to the medication etc. I will hopefully get the MRI results in about a week. Of course I'm stressing about what they will find - the usual cycle!! Fingers crossed I get clear results and can move forward as planned with the anxiety medication and therapy to get on top of this once and for all! I've only taken anxiety meds once about 6 years ago (was result of post natal anxiety) and that 12-18 months that I was on the medication, was the only real period of time over past 10 years that I didn't have health anxiety.
I'm sorry that you've been sent for another scan for bowel noises and I hope that you are soon able to resume meds to help with your HA alongside the suggested psychological intervention.
Just updating on where I got to on this one. Had the MRI of abdomen and all was fine. Although I'd kept myself much calmer this time around knowing that I'd had similar symptoms before, there was still a nagging doubt because the pain had just got so bad in back of ribs and in abdomen all on left, and such a specific spot. Still had some pain for a week or so after the scan, but have been put on Cymbalta now instead of Amitriptyline to try and get on top of the pain and the anxiety. Going ok so far, other than the terrible insomnia. Hoping that passes though, as generally feel a lot better than I have for ages.
Hi all, basically 2 years later and experiencing the same things (or very similar) again, so just on here to have a vent as I find it helps! Not sure why it always resurfaces as this time of year. Potentially stress induced, don't feel that I've been that stressed, but did start a new job about a month ago and had a busy time leading up to that and then the usual Christmas busy time! Went to my doctor about 6 weeks ago complaining about tiredness and heartburn type of thing. Blood tests and all fine other than B12 slightly low so had a B12 shot for the tiredness, not sure whether it's made a difference or not. Don't have h-pylori, Dr put me on pantoprazole or however you spell it. But progressively since then have also gone back to having bad upper back and rib pain in left side, and constantly feeling nauseous and upper stomach ache after eating. I do have IBS and have had random occasional pancreatitis a few years back. Haven't had a full blown attack again this time, but have felt close to it. Had endoscopic ultrasound and MRI (as well as colonoscopy) back 2 years ago, then got put on Cymbalta for pain/anxiety. Seemed to have helped a lot until recently. I'm going back to see my doctor next week, maybe I need to up my dose of Cymbalta as I'm only on a very low/half dose. But feel like I'm back to needing some reasurance from the doctor that they've investigated and still found nothing - she did mention last visit that I might be due for an endscopy, so I'm hoping that they might do an endoscopic ultrasound, endoscopy and colonoscopy all in the one go to get it all over and done with! I know I've experienced these things before and they found nothing, clearly there was nothing then otherwise I'd probably be dead 2 years on!! So I should be reassured, but there's always that stupid nagging doubt of what if this time it's different.
Jonathanbrsc
06-11-23, 23:36
You sound like me. I have right side rib and back pain but I was concerned I had PC too!
None of my tests have ever found anything
Just like clockwork the same issues are playing up again. Always happens at this time of year, and then I'll go several months all good again. This time it started more with lower abdominal pain, fullness and bloating. GP said was likely just constipation, so I took laxatives but ended up with terrible pains, and not much of a result. Got referred back to gastroenterologist as GP thought maybe he would want to do a repeat colonoscopy as it's been 3.5 years since the last one (was supposed to be on a 5 year repeat). Have also been a bit worried that it was something to do with my ovaries but only had ultrasound in May. Saw gastroenterologist and he thought sounded just like an evolved version of my IBS. So he told me to do a colonscopy prep to flush my system out. This worked for a day, but then got stuck not being able to go again. So started taking Movicol and then went the other way and had diarrhea for 2 weeks. The pain and bloating also didn't disappear after the clean out so that concerned me. Gastroenterologist said if it continues into this week he'll book me for colonoscopy in January. But I've also started having more upper abdominal pain as well again which always sends me into a panic. Last Thursday took myself off for a MRI of pelvis and abdomen (self referred). Get my results tomorrow. I have access to the images, but not the report yet. The images always creep me out as I think I see terrible things on them but how would I know what's normal and what's not, so I know I'm being ridiculous. Anyway will be a big relief if I get clear results tomorrow. Stressing out a lot until then.
Is it normal for IBS symptoms to evolve and change over time? Mine used to be mainly left sided, haven't had the lower right fullness and constant constipation before, and haven't had the constant bloated belly before either.
alpacagirl
18-12-23, 03:38
Not sure how old you are but I know my gut issues have worsened since I hit perimenopause. Apparently that time of your life can have all sorts of lovely effects on your digestive system. I'm a lot more sensitive to foods that I used to be fine with and more prone to constipation/diarrhoea/gas etc..
Alpaca girl I think you might be spot on! Thanks for your reply. I’m 44 and think I’m perimenopause. I wondered about this recently as I’ve been having some other peri symptoms and did some research.
I got my scan results back and nothing untoward on there (only a couple of minor things on the pelvic one, fibroids/cysts etc)
Still going back to see gastroenterologist in new year, but I think I’m going to have to work through some dietary things and perhaps some more exercise will help as well!
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