chronic pancreatitis 24/7 pain - Spontanuous complete releif of pain

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Hi everyone out there,

I was wondering if any chronic pancreatitis sufferer with 24/7 pain ever experienced spontanuous releif of their pain or a gradual reduction of their pain over time?

I read this is possible in medical litterature and have also seen a couple posts online where some people have testified to have had that experience.

Please if you are out there reach out and let us know,

Many thanks

Alex

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11 Replies

  • Posted

    From what I know, the less pain someone with Chronic pancreatitis suffers usually means the more damaged your pancreas is becoming.
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    • Posted

      Hi shaun,

      ?Yes I have heard of this as in the pancreas digests itself out and you become diabetic and no longer produce enymes. However I have also heard of other testimonies and reports in medical literature.

      ?1. I saw one post where someone suffered from chroic pancreatitis for 10yrs and the pain stopped on its own but never became diabetic and had no calcification or fibrosis of the gland (allthough his doc called it a pancreas "burout"wink.

      ?2. I saw another post where someone suffered from chronic pancreatitis and pain 24/7 for 8 years and woke up one day and her pain was completely gone.

      ?3. I saw another post where someone was on a feeding tube for 6 months becaused they had suffered from acute and debilitating chronic pancreatitis that showed on scans and one morning she woke up and was completely healed.

      ?4. I saw another case where someone suffered chronic pain and responded to enzyme therapy (i took them a year to become pain free after starting viokase or creon

      ?So there seems to be cases where the body just decides to recover or heal as if the person just had an acute attack and completely healed after that attack and cases where the body just seems to stop producing enzymes before the person becomes diabetic

      ?Could also all be false but why would someone bother posting something like that.

      ?The pancreas is a quite odd organ that is scientifically not uderstood as much as we would want 

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  • Posted

    I agree - the pancreas is a very peculiar thing and not well understood. My GP told me that doctors are only just scraping the surface of what the body can do and there probably are lots of cases where the pancreas resolves itself for whatever reason. Also every person is unique so no-one will react to the disease in exactly the same way. Fingers crossed for you.
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    • Posted

      Thanks for he optimism Nix smile. I really hope this could happen to all of us (a pain free life). Do you also have chronic pancreatitis? if so how are you dealing with it so far?

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    • Posted

      Yes, I do have chronic pancreatitis. I have low grade pain most of the time with occasional very painful flares - luckily they don't last more than 15 - 30 minutes. I really only get relief from painkillers but I prefer to either put up with pain or try other things such as distraction, yoga, excercise or a heat pad as I find the drugs make me feel drowsy and/or sick. I follow an extremely low fat diet religiously and try to drink at least 4 pints of water daily. I don't best to live as normally as I can but it can be a struggle.

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  • Posted

    Alex, sorry it has taken over a year I didn't know there was a reply from you on the diabetes site. I am the person with chronic pancreatitis whose pain stopped after 10 or so years, my consultant described it as pancreatic burnout syndrome. I wont write a lot now as I'm on a kindle and its so frustrating the typing. Will respond fully tomorrow

    Cheers

    Paul

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    • Posted

      Right, I’m a 44 year old male. So basically I had all but 2 of the markers for CP so had the diagnosis for 14 years. Had gallbladder out and a sphincterotomy, various nerve blocks and stuff that we all get.

      After 10 years of constant pain and nausea I woke up one day with no pain. It wasn’t a gradual thing, I literally woke up one day with zero pain. The nausea continued for a while but no pain. Fast forward to seeing the consultant and when I explained this miracle he said he’d read in the texts something he termed as pancreatic burnout syndrome, but I was the first of his patients he’d witnessed it in, ever. He said that theoretically the damage to the pancreas (the necrosis) becomes that severe that it destroys the nerve endings and therefore no pain is reported to the brain. It had been absent for 18 months when the pain clinic decided to come up with a plan to get me off the opiates . I was two weeks into it when I had the first pain in 18 months but it only lasted 5 days. So I’m still on the opiates but I take it more to stop the withdrawal than for any painkilling qualities.

       

      Now as I touched on above and what I struggle to understand is I do often have - not acute attacks - what they describe as ‘exacerbations of the chronic condition’, basically episodes of pain akin to acute attacks that lasts 3 or 4 days but they are months and sometimes years apart. So if I have burnout syndrome how can I still get pain at all? Also note here when I have pain and they do bloods my amylase isn’t raised at all. This is common in CP but not all medical professionals realise this. So the bloods show no inflammation in the body but this is because your base levels includes a permanently inflamed pancreas. Still with me?

      That aside, I was close once to a Frey procedure and TP has been discussed, but now understandably my consultant doesn’t want to operate at all and I’ve been told for someone whose had 20-odd attacks the pancreas is in fair condition. As I write this now I’m at the backend of another exacerbation after months of pain free life and eating what I want. I would say I’ve maybe had 6 or 8 episodes of pain since it stopped but they always resolve after a few days with anti-inflammatories and fasting.

      So anyway yes, I’m living (Just!) proof that after well, twelve years of CP the pain can disappear completely. A word of warning though , The consultant said it can be just as dangerous and troublesome as having the pain because your body loses the ‘early warning system’ of pain during an attack so you don’t know the pancreas is further inflamed.

      I’m still being studied as they are keen to understand this phenomenon and it will continue for a few years (the study I mean). Also I am not diabetic yet - another miracle.

      I can’t explain it as I didn’t do anything to stop the pain, and I wouldn’t say I stuck to a low fat high carb diet either. Just lucky I guess.

      YGW

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  • Posted

    Well, as an update, it turns out I didn’t have chronic pancreatitis after all - I had cancer. The tumour finally grew large enough to cause me to become very ill but as luck would have it I was able to have it removed and it hadn’t spread anywhere else despite it taking nearly a year to figure out what was going on. I just didn’t exhibit the right symptoms until the end and the tumour had caused pancreatitus which was masking the real cause. But then upside of all this is that I am now cancer and pain free! Very lucky to be one of he few survivors of this cancer and just hop8ngbit never comes back.
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    • Posted

      Pleased to hear it. In a way, if you know what I mean! Just underlines what a tricky little bugger the pancreas is and to diagnose conditions surrounding it. Hoping you stay well,

      YGW

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  • Posted

    Hello, I am 21 year old male. I've been reading many forums, though I know I shouldn't be doing this since it scares me and gives me more paranoia. But I'm just too curious. I had an episode last night til morning today, a gnawing, dull constant pain in the left lower to middle abdomen. Passing gas does temporarily relief the pain but it's very short. I eat normally, I try not to eat to much fatty food, though I do eat healthy sometimes. Yesterday I ate pan cooked fish and some rice at night, I did eat a chicken burger yesterday noon though. I these episodes few times, first one in 2016 so til today total of maybe 3-4 episodes. I did have some gallbladder problem, or I thought I did. Had some symptoms of it, went to the doc and did an ultrasound showing nothing, but that was very odd. As far as other symptoms goes, I think  I do remember a pale stool a long time ago. Some nausea, bloating, etc. I might be just over thinking  it and maybe it's some other problems. I do get some heartburns/acid reflux. But I want to know if this is really what chronic pancreatitis is. Are these symptoms CP? No matter what position I lay, when I do go through the pain, it still gnaws in that area. Maybe its crons disease? IBS? Diverticulitis? Or is that more lower in the abdomen? The area is literally a cm above to the left of my belly button. The pain gone now, but I'm scared to go through it again out of no where. sad very depressing. Help

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  • Posted

    Hello,

    "The area is literally a cm above to the left of my belly button"

    If the pain comes back, and doctor's tests and scans come back negative, try Carnett's test. Lie down, and get someone to prod the spot with a finger tip. It should hurt. Now raise your head or legs, to tense your abdominal muscles. Prod again in exactly the same spot. If it hurts more with tensed abdominal muscles then the problem is in all likelihood in your abdominal wall. That could be hernia or trapped nerve. If the pain goes away after three days you should be watching how long you sit down for, and avoiding over-exercise, just like you would a bad back. Google ACNES.

    Now all you CP guys should listen up. A Doctor Niraj, anaesthetist in Leicester UK, has been treating a test group of returning CP patients with lidocaine injections into the abdominal muscle with great success. Yup you heard that right. Long lasting pain may be a 'transferal' of pain to the nerves in the abdominal muscle. I kid you not. Central Sensitisation seems to be playing a role in permanently sensitising the nerves, and possibly reflexive guarding action has caused the tiny amount of nerve damage needed to flare up into chronic pain. Maybe, just maybe, a trigger point injection of anaesthetic from a pain specialist is going to help you.

    Pointers are - positive Carnett's test, finger-tip area of pain, pain worse first thing in mornign and last thing at night, pain doesn't wake you at night. In each successful case of anaesthetic treatment bloods were normal. When bloods were abnormal local anaesthetic injections had no effect.

    Good luck all of you. And do get checked out. NixKiwiWolf's story is just one of many I've read that had a less benign underlying cause than an hyper-irritated abdominal nerve. Still, good luck.

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