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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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  • wildjflippin
    wildjflippin jon54193

    Posted

    I am glad to hear your in early stages...My husband had very bad pancreatitis and he complained of headaches, the doctors said it was the toxins from the pancreas, perhaps you might do a liquid diet, like veggie and fruit smoothies for a day or two...are you taking any meds - could be side effects from them??  Hope this will resolve for you. Good luck and God bless
    • jon54193
      jon54193 wildjflippin

      Posted

      Thanks for reaching out wildjflippin, I REALLY aapreciate it and I hope your husband is ok. I'm currently not on any meds....but I will see my professor in 2 weeks. Any idea why my legs feel so heavy and why the complete brain fog?

      Lastly, my professor initially told me I can reverse this given time as there is no damage. Is that realistic? I've not touched alcohol in 8 months but don't seem to be improving and these symptoms definetily feel life threatening. I'm very concerned.

    • kapil53458
      kapil53458 wildjflippin

      Posted

      hi all.. Hope u r getting well.. I had pancreatitis from Last 3 year.. Chronic one.. My SERUM AMALYSE was 2500.. I continued enzymes for long time.. Now just two months ago.. Started side by side .. Homeopathy treatment.. Now the serum analyse is 200 .. My food is digesting without any enzymes... I don have any prob.. Its not less than a miracle.. But for this u my focus and dedication was sth which really worked.. I took porridge n mals.. Sweetlimelime juice and pinneapple.. Walking long hours.. This healed me.. U can also get heal.. Pls go to some goldmedlist of homeopathy medicines.. That wii cure.. It has worked for mee... Hope u all get well soon....
  • wildjflippin
    wildjflippin jon54193

    Posted

    I really think the toxins from your pancreas can cause all kinds of things...You can surely do well if you stop drinking, eat a good diet and try and relax...easier said than done I know...The toxins can make you feel like cra*....  I think its all connected...but ask the doc what he thinks...keep us posted XOXO
    • jon54193
      jon54193 wildjflippin

      Posted

      OK , well it would make sense, it's just so worrying - I haven't felt normal in months and every day i wake up I feel like utter sh&t, I can't remember the last time I woke up feeling fresh. Thanks a million for your time!
  • wildjflippin
    wildjflippin jon54193

    Posted

    also if you do facebook there is a group called Pancreatitis Pals and they are very knowledgable and caring, they might have some answers for you... they are in the UK as well   (I am USA)  
  • Theresaa
    Theresaa jon54193

    Posted

    Hi. My husband too hss early cp but although not told much I don't think it is curable. It's more about managing it now. Although hiw to manage is the conflicting bit I'm afraid. Remain positive and don't let it rule you is the best cure. Best wishes to you. Xx

    • jon54193
      jon54193 Theresaa

      Posted

      So not curable even if only early and no damage?
    • kapil53458
      kapil53458 jon54193

      Posted

      hello dear jon.. i advise you to be on fat free diets for some times.. if you feel better u can cary on with low fats.. try to develop small meals habits..and just walk.. do this for one or max two weeks .. you will surely see the results.. dont get panic of what will happen .. have enzymes if malnutritions persists... dont worry ... 
    • Theresaa
      Theresaa jon54193

      Posted

      That's what we've been told. No damage to my husband. He had a pseudo cyst that was drained and no other damage and is not taking any meds. He has just had to have hus appendix out too. We hoped that it was just that and s misdiagnosis but I think it's just us wishing. The problem is that there isn't enough research into this. Acute pancreatitis can heal but once it's gone into chronic it's not. You just have to remain fit and healthy. Concentrate on a low fat diet. Don't have alcohol and sensibly exercise to reduce further damage to the pancreas. That's what we've found. We're now trying tocchange life habits. Not easy but a must really. X
    • wildjflippin
      wildjflippin Theresaa

      Posted

      If you facebook you might want to join a group called Pancreatitis Pals...they are open to ppl with CP and their families. They are very compassionate and they know all about this disease.  You can ask any questions you might have.  I joined because of my husbands acute pancreatitis.
  • nataliefranc
    nataliefranc jon54193

    Posted

    Can I ask how your early chronic pancreatitis was diagnosed as I've had so many tests all come back normal and been suffering for 6 years.
    • jon54193
      jon54193

      Posted

      It was also only 'suspected' early CP
    • nataliefranc
      nataliefranc jon54193

      Posted

      Ok thank you. I had one of those but it was 6 years ago when it all began and nothing showed. I recently had detailed MRI of pancreas and it was negative. Hoping I don't have it obviously but just don't believe where I get my pain can be ibs! Thanks for reply.
    • jon54193
      jon54193 nataliefranc

      Posted

      Thanks nataliefranc - I had an MRI last week which showed slight swelling on one side of the pancreas but teh prof said he was not concerned and that  it would heal. Not sure I'm convinced...
    • nataliefranc
      nataliefranc jon54193

      Posted

      I hope yours turns out not to be. From my reaserch and worry over the last 6 years it doesn't sound a nice disease at all sad wish they would find a cure
    • Theresaa
      Theresaa jon54193

      Posted

      Hi. We had endoscopy upper and lower. Mri and ct as all came back normal apart from an ulcer which was treated abd healed. . Then had ultrasound endoscopy as they found a pseudo cyst. They said from the ultrasound endoscopy that it definitely wasn't pancreatic cancer and put early chronic pancreatitis and???? We saw the consultant last December and he said cp but told us little else. My husband has all the symptoms others mentioned. Pain, nausea, vomiting, loose stools occasionally. He had another routine mri in may and we are waiting to see the consultant still. However 3 weeks ago he got rushed in with appendicitis and had surgery to have his appendix out. He ignored the pain as he is used to the pain with cp. I'd like to think they were wrong but he still has the pain and has been sick once since he had his appendix out. He has a positive outlook so pretty much carries on as normal rather than let it rule him. I joined this forum as I need information and need to know what can happen. It's an amazing group. What you read on the Internet is a possibility but not a definite so don't allow it to bog you down with worry. Take each day as it comes. I do hope yours is curable. That would be amazing. My biggest wish is they would research and find a cure. I wasn't aware of how many sufferers there are until it affected us. Your not alone and the future is positive. Best wishes to you all xx
    • jon54193
      jon54193 Theresaa

      Posted

      Theresaa - Best wishes for your husband, I hope things work out for you. This group seems great and just what I needed as I feel very alone in all this.

      My bloodwork is always clean, no signs of any damage, just very slight swelling yet I feel awful and seem to only be going downhill. I can barely walk and it's now a year since the symptoms started. I feel like I'm going nowhere and havent gotten anywhere in terms of a real diagnosis. 

      Have a great sunday. 

       

    • Theresaa
      Theresaa jon54193

      Posted

      Good luck Jon. Hope you get some answers soon. Have a good Sunday too. X
    • donna58269
      donna58269 nataliefranc

      Posted

      I was diagnosed with 72 hr fecal test.  Had eus but it was normal   Beware with eus. I called hospital before test to ask about anesthesia and was told I would have propofal. When I went to the hospital the day of the test they said I had to have a "breathing tube" when I freaked out telling them no one told me about a breathing tube they didn't really listen to me or explain.  After the eus I found out a breathing tube is really endotracheal intubation and they give you several drugs that paralyze you so you can't breath on your own and are hooked up to a ventilator!  I'm angry they were so evasive on explaining anesthesia procedure to me. Beware ask lots of specific questions. They will apparently avoid a full answer
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