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I really need help!

Posted , 11 users are following.

jon54193
jon54193

Dear all,

6 months ago I was diagnosed with EARLY chronic Pancreatitis. The last few weeks I've been having the following complaints:

- incredible headaches

- extreme brain fog - I can barely wake up/

- cannot feel my legs, they are VERY heavy.

- pain in wrists

- neck pain

What the hell is going on? I'm worried I may not wake up...! Please help, I really would appreciate it. Thanking you all in advance.

 

1 like, 54 replies

54 Replies

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  • smyrnaki
    smyrnaki jon54193

    Posted

    Hi jon,

    As far as I concerned , there are no pancreatitis sympthoms as you desired.

    I think you must go another doctor for this.

    Umut

    • jon54193
      jon54193 smyrnaki

      Posted

      Thanks Umut - I hope you're right, I'm praying...

       

  • jon54193
    jon54193

    Posted

    So I've just had more testing done at another hospital who have just confirmed my problems are not pancreas related - MRI clear and stool test normal. I still have very loose stools, they look greasy, abdomonal pain which has improved....still lots of brain fog as well as groin pain. I guess I need to go with this....and then try and find out where my problems are really coming from. It's been a terribly rough 14 months and I wish everyone lots of luck, hang in there and keep fighting! Peace always, Jon.
    • nataliefranc
      nataliefranc jon54193

      Posted

      Glad your scans were clear. Mine were too and unfortunately I'm still in pain and still don't believe it's not my pancreas! But maybe I should just trust the scans! Please keep us updated
  • jon54193
    jon54193

    Posted

    Now I'm getting SEVERE brain fog, I can't wake up and it's every day! I'm also getting a very sharp pain, right side in my back (close to ribs). Still getting left abdominal pain too...

    I'm worried I'm not going to wake up...All doctors have told me I'm fine, but I'm clearly not. So desperate! I'm starting to wonder if this could even be a kidney problem but then I'm sure previous testing would have highlighted this....

    Other symptoms: Groin pain/ headaches/exhaustion.

    Any thoughts/help welcome. Thanks a milloin. Jon

    • Brett54010
      Brett54010 jon54193

      Posted

      Hi Jon,

      Not sure if my symptoms are relevant to you but just in case it is I wanted to let you know my own experience. I also get this constant right sided back pain and headaches (This occurred after a bad alcohol poisoning/dehydration event from drinking strong spirits) and the pain as not left me since and caused an ongoing change in my urine. I also wondering of my problem could be kidney related. No doctor has been able to determine the cause of the pain yet. The doctors I have seem to think some of my symptoms are muscular skeletal. As whatever is going on internally for me seems to setting off ongoing muscle spasm/tightness in my right side of my of back and this muscular pain also flows through to give me jaw tightness on right hand side and also headaches and head pressure on right side. I Just wanted to let you know as some of your symptoms sound like it could be muscular skeletal (like the neck, arm, back, head). I'm not saying that the underlying cause is this but your back muscles may be spasming/tightening as a reaction to something internally wrong and this could be a reaon for some of your symptoms. So if you try to stretch, exercise, and go to a Physio this may help with some of those symptoms. I've been trying this and sometime can help a bit with relieving pain a bit.

      Best wishes for managing your condition and trying to find a diagnosis. I am following a similar path at the moment.

      Cheers Brett

  • donna58269
    donna58269 jon54193

    Posted

    I was diagnosed about 3 yrs ago with early cp.  For 3 years before that I had what I told Drs was migrating join pain.  I had pain in my neck,knees'hip and wrist. I also had brain fog.  I went to a nutritionist who did testing and told me I was extremely low on b vitamins,a vit,zinc,magnesium ,pretty much everything.  The malabsorption from epi caused it.  Since starting pancreatic enzymes I feel so much better   Good luck!
  • jon54193
    jon54193

    Posted

    Thanks Donna. Hope you keep feeling good...

    I had a full body PET/CT scan yesterday. Waiting for results. Still very unwell.....

    I'll keep you posted..

  • jon54193
    jon54193

    Posted

    So I had a full PET scan of my body and it came back clean. I also had an MRI of the pancreas, also clean, no problems to report whatsoever. Stool test came back normal.

    I still suffer from a constant stabbing pain in my left side. I'm told this is from a combination of IBS and Fybromalgia....Can this really be?

  • wildjflippin
    wildjflippin jon54193

    Posted

    I think the MRI would have picked up pancreas problems.  It is possible IBS could cause a lot of issues. I take it your doc is a gastroenterologist.  You do need a specialist.  Remember the squeaky wheel gets the grease so if you arent satisfied and feel in your heart that something is "off" keep pressing your doc for further tests/answers     best of luck
  • jon54193
    jon54193

    Posted

    Thanks wildjflippin - yes I had an MRI through one hospital and a PET/CT scan through another  - both with gasto specialists and both came back clean and it's suggested I have functional problems/IBS which is causing all my pain. I've been having serious problems for over a year! Trying to move on with my life but when in pain like this it's difficult....
  • wildjflippin
    wildjflippin jon54193

    Posted

    do you feel its all related?  could the headaches be a separate issue?  It almost sounds like drug side effects too.  Again, you need to keep the fight going to get to the bottom of this.  I had to really be an advocate for my husband with my constant badgering of the doctors to come to the plate - hang in there  I know its tough to get the strength to keep on going but dont give up.   Peace   JF
  • emmab
    emmab jon54193

    Posted

    Hi John I am new to this site, I have chronic pancreatitis it is horrible illness I take enzymes vitamins ect, do you mind me asking if you're from UK, as my consultant has not arranged MRI/CAT scan only had obdomenal scan which shows scarring on pancreatitis , I feel when I see him doesn't listen ect, can I request for these scans I would appreciate some advice from anyone on this forum.

    Best wishes

    Emma

    • nataliefranc
      nataliefranc emmab

      Posted

      I'm in uk I've had endo, colonoscopy, ultrasounds, bloods, stool tests, ct, MRI over last 6 years for upper left abdo and back pain. All mine are negative but my fear is chronic pancreatitis. I'm shocked you haven't been offered any other tests. Perhaps as your cp was diagnosed via a scan already they don't feel they need to do further tests.

      From what I've read it can be hard to detect which is perhaps why I've had so many. I'm obviously hoping mine isn't like the docs tell me it's not but I can't help but worry!

      If your on face book there are some amazing support groups called chronic pancreatitis support and pancreas pals which is a uk group. I've learn a lot from them.

      Can I ask how old you are, what they think as caused your cp? I think alcohol caused my problems I'm only 33 but drank lots in 20's. Also do you have loose pale stools as I'm ALWAYS constipated. I'm hoping this is another clue that I don't have it! It's the location of pain that worries me and the fact it's worse after alcohol!

    • emmab
      emmab nataliefranc

      Posted

      Hi Natalie,

      I also have pale stools then constipation also it's horrendous some days, If you don't mind me asking can I request these scans because I am afraid of the worst maybe pancreatic cancer? I know it's a hard cancer to spot apparently, I have been I'll for 2years now, are you still under your consultant what part of the UK are you from? And my drs Do think caused by alcohol I am 49 by the way,

      Best wishes

      Emma

    • nataliefranc
      nataliefranc emmab

      Posted

      I'm in the midlands a city called Worcester quite near Birmingham. I was refered to a specialist and I told her my pancreas worries and she she said she doesn't think it is but ordered me the tests to rule it out. Now I've been discharged with ibs so I'm back to nagging my GP to do something! Worried in going to live with pain and no diagnosis for rest of my life! Were you constipated before your diagnosis or is it the medication that makes you that way as I've read it can. I've heard most people with cp have chronic diarehha and vomiting. I don't ever get either. I'm hoping that after 6 years of it and continuing to drink that something would of shown on scan or blood tests! I don't drink anything like I used to but I have the odd couple on social events but pain always worse next day! Do you have raised lipase and amylase and did you ever get acute attacks before it turned chronic?
    • emmab
      emmab nataliefranc

      Posted

      Hi Natalie,

      It's so frustrating for us all with this horrible illness, yes I do have raised amylase last stools test about a year ago as I said to another member on here we feel we are not getting the right treatment from our consultant. I'm from a place called Northampton about 15 miles from Milton Keynes/Bedford, He is quite rude sometimes as well just because I think I used to drink wine with my dinner every night, The thing is we go to work pay our taxes ect .

      Kind Regards Natalie,

      Emma

    • nataliefranc
      nataliefranc emmab

      Posted

      Only a very small percentage of people that are classed as alcoholics actually develop cp so I think other factors must come into it I can't see alcohol being the main cause. Did you ever have acute attacks? It is very frustrating x
    • nataliefranc
      nataliefranc

      Posted

      P.s I have family around your area so i know where that is!
    • emmab
      emmab nataliefranc

      Posted

      Hi Natalie,

      It does sound like you have pancreatitis, apparently it is a difficult disease to diagnose, it definitely doesn't seem like ibs because you have symptoms exactly same as me, and yes my GP said to me you are just unfortunate to get this because he has seen full blown alcoholics who do not get it. Can I ask if you're still under consultant and what medications your on, My last EUs showed calcification on my pancreas,it's so frustrating and disabling.

      Best wishes Natalie

      Emma

    • emmab
      emmab nataliefranc

      Posted

      Hi Natalie,

      I did send you a message earlier not sure why it was deleted, maybe we could chat via Facebook ect Emma Boddington

      Best wishes

      Xxx

    • nataliefranc
      nataliefranc emmab

      Posted

      Hi I've looked for you but a few with the same name! I'm on Facebook Natalie Franceasca Gowing can you see if u can find me x
    • emmab
      emmab nataliefranc

      Posted

      Hi Natalie,

      I have just got home from work I will check facebook under your name.

      Best wishes

      Emma

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