Help to control the pain and get me out after a year and a half

Posted , 6 users are following.

Hello

Just some advice....

Suffering with these issues seven years on and off first time I thought it was my heart and that was it

Some ways I really wish it had have been though, I nearly got wed but then these problems got so strong I can't leave the house and couldn't make my own wedding, safe to say she was gutted and dumped me.

Now I just want my life back, I do exposure therapy with a person and I never get any further even after a year, basically if it's a good day I can but I get the pain at home. Most meals I have are low in fat and I don't dare touch caffine in this state. To note if I drink alcohol the last time it caused so much pain I was in a pub cuddled up for three hours and had to urinate myself because I couldn't move, problem is with other drugs I seem to get pain even paracetamol.

I have Pregablin which I'm trying to get down, up to 100 mg daily at the moment and even a month don't feel any better, but thankfully not worse, even half a coedine tablet put me in pain then I had a bit of a high. I need my tests and to get them done but I can't leave the house very far and too much pain even if I did get in there.

Oh I also have avascular necrosis of both my hips and can't take any pain meds for them which does suck really, knee started to hurt. I am only 29 too.....not a way to live.

I used to think death was scary, but living in a world where they can't sort your pain is worse

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11 Replies

  • Posted

    I dont really know what to say Stevie as your case makes my problems seem like a walk in the park especially the length of time you've had it. Are they treating you for gb problems and have you had all the tests associated with it? Have you any family that can advocate for you as I think someone should. Pester the life out of your GP until you get treated as this seems the only way to get results. It has taken me over 5 years to get me to where I'm at now and that is gb removal in two days time. Lost count of the referrals and appointments I've had to go to. Give a prayer to God and I will to.

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    • Posted

      Please keep us updated how the surgery goes for you

      It IS a common thing that they don't seem to pick on gallbladder, they think we are too young or not pregnant it doesn't seem to get picked up on!

      This forum has been good though but generally just want a life back really

      That and the lack of care through some GPs are awful. Generally they treated it as abdominal so stomach acid stuff without actually realising I was in pain, they assumed it was agorophobia except when they saw me have the same pain at home.

      My family have been pretty useless even with my avascular necrosis diagnosis if I'm honest ......

      Good luck with the surgery though

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  • Posted

    Hi Stevie , so sorry you are suffering this bad . I understand how you feel

    as 11 months ago I had my gallbladder taken out . For the last 11 months I have

    been housebound with the pain and the frequent need to use the toilet .

    I can't eat anything without getting pain , I have forgotten what a meal is as I can only

    tolerate a slice of toast or 2 new potatoes or 2 plain biscuits.

    The medical profession don't want to know now so I'm left with no life and starving

    to death .

    Where you say " I used to think death was scary , but living in a world where they can't

    sort your pain is worse " that's exactly how I feel . I hope you find something to help

    you . Let us know how you get on.

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    • Posted

      That sounds so sad Linda !

      Get them GPS on the go and give you something, what have you tried ?

      These patches are supposed to be good for long term pain so could help at least?

      Hope things get better for you soon

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  • Posted

    So sorry Stevie. I think you should demand to be seen by your surgeon or at least a doctor and not take no for an answer. The squeaky wheel gets the oil. Have you tried Zantac?

    If you LITERALLY are unable to get out of bed then you need to call an ambulance and get yourself checked into a hospital. It doesn't sound like you're getting the care or the nutrition you need. If it is agoraphobia then they can help you with medicine for that too. It seems like it might be a bit of both.

    In the meantime please know that your problems are not common with gall-bladder removal, so I dare speak for everyone here (or most everyone) that we most likely can't help you. 😦. Please get some outside help. This is no way to live when you're only 29.

    It's a big world out there and the world needs you and your god-given gifts to society!

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    • Posted

      This is true but I am so weak and in pain at this point if they got me to A&E without pain relief first I wouldn't be able to get in the building I can't settle even at home a lot of the time due to the attacks !

      Nutrition is difficult I admit and have very strict rules on what I can and can't eat ongoing it's been 7 years but it finally got worse the last two where it started to make me home bound, the attacks are just as much at home as when trying to get out and I ended up getting stuck near petrol stations or even at work not being able to leave because of the pain

      But I have been optimistic but the last year and a half we haven't got anywhere, it has already broken one marriage up and worried it could impact my new relationship !

      I think some of common with gall bladder / pancrease that area really, specially with them ruling a few stomach ones out with the endoscopy, but I certainly agree not a life to live atm. Even once this is sorted need my creeky hips doing next as well !

      Thank you for your time though 😃

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  • Posted

    So sorry Stevie. I think you should demand to be seen by your surgeon or at least a doctor and not take no for an answer. The squeaky wheel gets the oil. Have you tried Zantac?

    If you LITERALLY are unable to get out of bed then you need to call an ambulance and get yourself checked into a hospital. It doesn't sound like you're getting the care or the nutrition you need. If it is agoraphobia then they can help you with medicine for that too. It seems like it might be a bit of both.

    In the meantime please know that your problems are not common with gall-bladder removal, so I dare speak for everyone here (or most everyone) that we most likely can't help you. 😦. Please get some outside help. This is no way to live when you're only 29.

    It's a big world out there and the world needs you and your god-given gifts to society!

    Report Reply
  • Posted

    steve,

    Just trying to understand your background. Did you remove the gallbladder already and run in to this problem ?

    or

    if you not removed your gb already , then need to check hida scan and ultrasound to see if issues with it.

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    • Posted

      Yes certainly need to get it scanned and the other parts around there, I got fobbed off a lot when it was less in pain and I could actually get to the hospital unfortunately and how I've ended up like this.

      Because of my age they didn't take it seriously and now a point I can't just leave back and forth it seems which is sad

      Then again they thought nothing was wrong with my hips then it came back as avascular necrosis so they were wrong about that, I worry they can't find anything decent pain relief wise they haven't been good to me in the past 😦

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