Worrying pain...

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Hi All,

Those of you who know me know my background. Those of you who don't, I have CP symptoms with no diagnosis appart from IBS with functional dyspepsia.

Recently my pains have increased in pain and I am struggling to get them under control. It's the epigastric pain, pain under my left ribs in my back and the pain raidiating into my upper back and middle spine which is causing concern. My left shoulder blade has a lot of refered pain. My right sided pain under my ribs is back with a vengeance too. My stools have gone yellow and fluffy again. I can't eat without being in extreme pain. I'm liquid only today. I am taking my omperazole morning and night, Iam also taking amitriptyline, grape seed, turmeric and milk thistle.

Is this just normal progression for CP? Am I having an acute attack? Would I know by pain that it was an acute attack? Or am I just having a bad flare up. How do I get this under control? Believe it or not, this has been caused by me eating a slice of Pizza! If there's nothing wrong with me and I can "eat what I like" then why the hell has this happened to me?? I've had all celiac, IBD, allergy testing so it's not that! Why can I eat fatty food?! The pain is driving me bloody insane!! I need a break! The kids are ill, I feel like a crap mum. I feel so down 😔😢.

Sorry to rant, just feel so alone and with no one believing me and no answers its driving me crackers!

Hope you are all as well as can be!

Wishing you all a merry Christmas! Hopefully as pain free as possible!

Gem

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7 Replies

  • Posted

    Sending a hug to start with hun, get yourself to the doctors this week and ask him/her to prescribe you some enzymes to help break your food down, you take them with food and they should, if you have CP, reduce or stop the pain you get after eating and calm down you having to go to the loo so much and calm down your stools too. As for the pain now, your gp should address your needs, especially just before the holidays and not leave you like this.

    Fingers crossed for you but plz go get help, don't leave it like this, let the doctor access whether this is acute or a flare up.

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    • Posted

      Hi JoJo, thank you for your reply. My consultant refuses to give me creon whilst my faecal elastase is normal. They are also adamant that I don't have CP as my scans and EUS were normal. I have begged my GP to perscribe me them too but she agrees with the consultant that I don't need it whilst my scans are normal. My GP does believe me when I say it's my pancreas but she said with normal scans what are they supposed to do. The only blood tests that showed anything abnormal were vitamin d and calcium both of which are being treated. I also have a fluctuating ALP level.

      I have seen the pain management team they are going to give me a lidocaine infusion to see if it helps stop the pain. But other than that I have to take just paracetamol and ibruprofen as I am still breastfeeding my toddler. So I'm pretty much stuck at the moment 😢

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    • Posted

      The first time i saw a consultant for my CP was about 7 yrs ago, it took them a year to work out was going on! Anyway he said at that time the best way to tell if it was CP was to use the enzymes, they wouldn't help if it wasn't CP!

      Also my scans have not shown what/why/when and where in my pancreas but according to my consultant at Leicester Hosp, whom I am told is one of countries leading experts, it can take up to 15yrs or thereabouts for anything to show on CTS OR MRI's etc, sometimes they can see something and fix it/remove etc but sometimes they cant until its extremely advanced. I think it is unfair that your medical team have such a hardline about diagnosis and treatment.

      Have you thought of a 2nd opinion?

      After all this is your life, your pain not theirs!!!

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    • Posted

      I can't belive you have over the counter pain relief, I have morphine twice daily to help me cope, my heart goes out to you hun, noone should suffer CP pain with over the counter meds!
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    • Posted

      Thank you again JoJo, my GP wants me to wait and see what the surgeon has to say at the end of this month. If he doesn't help or shed any light on it, then she is going to refer me for a second opinion! I'm Not too far from Leicester so I might asked for a referral that way if I'm allowed to! Can I ask your consultants name?

      Through my readings on various forums there seems to be no standard practice or treatment for People with CP or CP symptoms. Some people get to trial creon other don't. I do feel my gastro is being rather hard. Especially after the pain I'm in every day sad

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  • Posted

    How horrid Gem I feel for you and agree with others re getting another opinion.  I'm not one for recommending self medicating however I can't see why enzymes would be a problem but have no clue if they might interfere with other meds you're taking.  So that's a disclaimer of sorts haha.  

    I believe you can get over the counter digestive enzymes, obviously if you decide to go that route you'd best chat with your usual pharmacist to check they're good ones and also if they're ok with your other meds. 

    Best advice is another doc when you're in pain or even your local ER if pain is severe, they'll check everything you present with. I'd even take a stool sample in too.   I hope things settle down especially over the holiday.  Merry Christmas.

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