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Never ending problems

Posted , 9 users are following.

jon54193
jon54193

The pain never ends, results come back clear and everyone around me thinks I'm complaining about noithing.....I need help, I need a diagnosis, I'm so tired of this.....doctors keep telling me it's a functional problem mixed with fybromalgia, excuse my french but BULL**IT! Not sure what to do next but one thing is for sure, I can't live teh rest of my life like this...

 

1 like, 168 replies

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  • manda1030
    manda1030 jon54193

    Posted

    I sure understand pain on multiple levels,, I have RA, Chronic Pancreatitis, and Fybromyalgia plus variious other things,,, Have they checked you for Fybromyalgia? I know it causes wide spred pain and does different things to different people. Also there are many forms of Arthritis maybe you have a diffrent kind. It took several years to figure out what all was wrong with me in fact 6 to be exact. I was where you are now. ER kept telling me I had a virus. My family I think thought i was loosing my mind. Don't give up!

    ​Though if you don't mind I may suggest, trying to see multiple kinds of Drs. Not just a Reumotoligist but maybe a internal medicine Dr. as they are fimlair with multiple conditions. I wish you the best and hope you find relief soon. you know your body better than anyone. If you know something is wrong go with your gut and seach out the answers. I only have one other small thought with CP I have a lot of aches and pains from malnurishment my body fails to asorb many needed vitamins. You could also have some kind of nutrtional deficiancy. I am by no means a Dr. but I feel and understand your frustration. I really hope you find relief soon!

  • manda1030
    manda1030 jon54193

    Posted

    oh gueeze i have to appologize to you I misread... CP is very hard to diagnose in beginning I have had it about 15 years they figured it out just years ago...... Have they done an endoscopic ultrasound? Or an Mri or an ultra sound? Mine was finally found on an MRI after i had withered down to under 100 pounds...
    • Dreamy82
      Dreamy82 manda1030

      Posted

      I did all the tests there are to do: CT with contrast, MRI, MRCP and EUS...and NADA! The doctor told me: fuctional problem...however he said, in early stagea of CP you often can see nothing on the imaging or blood tests. He couldn't confirm the diagnosis, but he did give me Creon, which I'm incredibely thankful for. My pain have significantly reduced since starting taking them. I am however kind of malnourished and feel tired or dizzy most of the time. How do you get your vitamins with CP?

      I am thinking also about checking my gallbladder function, because that could have been the onset.

    • manda1030
      manda1030 Dreamy82

      Posted

      I take vitamins mainly D, B complex , iron , folaic acid and on top a multivitamin + probiotics... I am glad you can take Creion I can not makes me cramp badly and throw up. I had CP for a good 10 years at least before they. Found it. It has been 6 years since my diagnosis. Now I have sever scare tissue and calcium stone formations. I actually had the Dr.s tell me to give up. But I am bull headed not gonna happen. Still smiling through the pain. I wish you well. A low fat diet is so important. I am on no more than 20 total grams of fat a day. Keep on hanging in there they will figure it out I am so glad they started you on creion before worse damage was done.
  • jon54193
    jon54193

    Posted

    Thanks a million people! For me, since 1 year ago:

    Endoscopy - pancrease 'didn't look right' so suspected pancreatitis was diagnosed.

    Moved hospital to get a 2nd opinion:

    MRI - all clear

    CT - all clear 

    PET scan - all clear

    Blood work - all clear

    Liver Biopsy - all clear

    72hr stool test for fat - all clear

    Multiple blood tests - all clear except gamma GT

    Symptoms:

    Chronic abdominal pain, mainly left under ribs

    Back pain mid, left

    Headaches, diziness

    Stiff hands, knees, neck

    Groin pain, lower abdomen, all left side.

    Loose, oily looking stools

    No energy, need to sleep.

    I just lost my job as a result of all of this, an absolute nightmare -  I'm desperate for some answers. My family and frineds tell me it's all in my head as do pretty much my doctors! 

    Hang in there all of you.

     

    • manda1030
      manda1030 jon54193

      Posted

      It is not in your head . my doctors said I had a virus. The pain you are describe sounds like CP. So hang in there I went to 7 different hospital's not including Dr. Visits before I got my answer. It took 6 years for them to figure it out. Try a endocrinologist. Just don't give up. I too am now on disability for life.... Best luck to you and sending positive thoughts and wishes your way that you find your answer soon!!
    • Gem1384
      Gem1384 jon54193

      Posted

      Hi Jon,

      Have they not done a colonoscopy or sigmoidoscopy? With your Lower abdominal left side pain I think that should be an option and also a HIDA scan to rule out gallbladder dysfunction. GGT rise points to liver issues? So it might be relevant for them to check your gallbladder. My consultant also ordered a SeChat scan aswell but as they found my gallbladder problem she cancelled that so that is another thing to possibly check. Have you had the usual h.plyori, IBD, celiac stool/blood/biopsy tests done?

      Gem

    • Gem1384
      Gem1384 manda1030

      Posted

      Hi Manda,

      I've seen your posts on here and want to say how sorry I am that you have CP and are in pain with it sad

      Sending you positive thoughts! Stay strong!

      Gem

    • manda1030
      manda1030 Gem1384

      Posted

      Thank you so much! I wish you the very best. I just do the best I can with what I can. I hope everyone on here finds the relief they so deserve. I am sorry you are struggling also. I wish you many happy moments on your journey to wellness.
  • jon54193
    jon54193

    Posted

    How do ppl take Creon, what quantities?
  • Ruthie49
    Ruthie49 jon54193

    Posted

    I've been on and off this forum for months and just wanted to say I am in the same boat as all those who have CP symptoms but clear scans/no diagnosis. I've had ULQ pain and pressure every day for a year and off and on before that. Loose stools, weight loss, some low FE results (but also some normal ones). These symptoms are profound and have changed my life. It's particularly bad at the moment with lower gut spasms too. In the last year I've had gastroscopy, colonoscopy, CT, MRPC and EUS. All clear, so what is going on?! Tho pain is daily and worse after food. I was never a big drinker but haven't had a drop in the last year, low fat, fodmap, lactose free, gf, you name it, there's hardly anything left to eat! And what there is causes pain. I've been seeing a gastroenterologist through all this but finally have an appoint with a pancreatic specialist on Nov 4, so will keep you updated.

    It helps to know there are others going through similar struggles but I wish were all well and could get answers. Love to you all and hang in there, we must keep hope alive somehow xx

    • Dreamy82
      Dreamy82 Ruthie49

      Posted

      Hi Ruthie,

      Sad to hear you are going through all of this too. Please do keep us updated, as we are all searching gor answers.

      Have you tried digestive enzymes? They helped me reduce the pain quite a lot. I am currently on Creon.

      Even if we got somehow the CP diagnosis, in terms of therapy, there wouldn't be much more options, ecxept digestive enzymes and pain killers. However, we would at least know what's going on.

      Best to you!

    • Ruthie49
      Ruthie49 Dreamy82

      Posted

      I have tried Creon but tbh, I wasn't sure it helped me much. Having a bad time with very loose stools again though so might try again. Had your FE been normal? Mine has been low but the last one was normal. It's the DAILY under rib pain through to back that really makes me fear that this is a long term issue. When it's bad I get burning and some sharp, twisting pain under the rib too as well as the ache and nausea, shivering and just generally feeling awful.

      I'm grateful my scans have been clear, I don't want a CP diagnosis but it's hard living in this medical limbo and having to hide it.

      I hope we can all get some answers but even better, relief from these symptoms.

    • Gem1384
      Gem1384 Ruthie49

      Posted

      Hi Ruthie, I've just caught up on all posts from today smile

      Just wanted to say that my pain is daily, especially worse after eating. Under my left ribs, in my epigastric area, in my back, up in my shoulders. Once is starts it doesn't stop all day. I can take numerous painkillers that don't touch it at all.

      All my tests are normal. Apart from my HIDA scan. I know it's my gallbladder that starts everything off. I can suffer the pain my gallbladder but the pain on my left side is so painful and stabbing and boring. It goes straight through me and into my back. It's horrible. I can't tolerate fats at all anymore. They make things a lot worse. There's got to be someone out there that can put everything together and give us a diagnosis!

      I swear we need a massive conference of people like us all and loads of specialists and we can all thrash it out until we get some anwsers!

      I wouldn't wish daily, Chronic pain on anyone. It's soul destroying! I've been really strong but today it got to me. I had to curl up on the sofa with my 3 years old and 14month old for company. I couldn't move sad I'm so so sick of it!

      All of us on this thread are so similar.

      I hope we all get some answers and pain relief soon!

      Gem

    • Ruthie49
      Ruthie49 Gem1384

      Posted

      Sorry to hear you have had such a bad day Gem. It is the relentless nature of it that gets to me. Mine has been even worse this week which triggers a lot of anxiety. I am a mum too and I just want to feel fit again for my daughter.

      Do you get any relief from it? I hardly eat any fat at all now, so limited with food. It seems the research is just not there with the pancreas and there is so much more to discover about it. I really hope we can all get answers and relief soon.

    • manda1030
      manda1030 Gem1384

      Posted

      Just wanted to say I am sorry you feel so bad and I agree with you 100% More funding must be put a side to find a cure! Best wishes sweetie hang in there!
    • chica
      chica Ruthie49

      Posted

      have you tried pancreatic enzymes.

      i've been on them 3 days thanks to reading advise on this forum.

      they're beginning to work.

      i researched on the various types you can buy but when i got to the farmacia here in spain, they only had the one type which was good cos i didnt have to make a decision.

      my doctoe had prescribed proton pump capsules which havent touched my pain, but i havent knocked them off yet.

    • manda1030
      manda1030 Ruthie49

      Posted

      Hi Ruthie, I was just wondering you said Creion doesn't help you either are you on any other enzymes? I keep telling them Creion makes me hurt worse and sick and they just up the dose so i don't take it. I like you am frustrated with this process. I home school my son and as you say it is our family that gets the worst end of this. I have watched fear in my husbands face and tears in my sons eyes. I feel so guilty for them having to watch me go through this. I do my best to hide it from them as much as possible.
    • Ruthie49
      Ruthie49 manda1030

      Posted

      Hi Manda, I haven't tried any other enzymes though I've heard there are others on the market. I've gone back on the Creon this week as my symptoms have got worse and I can't digest but I haven't seen any change yet.

      It's so hard trying to hide this from our children. I'm having a bad time with this right now and I wake with pain and complete terror for the future. How does everyone deal with the anxiety?

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