Mind playing tricks

Hi all,

As I've discussed before I am awaiting confirmation for Pbc and have up to now been hopeful they have got it wrong based on the fact I feel normal, which I know deep down is wrong but what I've noticed this weekend in particular is that I am breathing sleeping and eating Pbc where I can't keep off the internet, can't stop reading about it and are feeling like an obsessive crazy woman. This is making me think I have symptoms like I've itched, have a pain in my leg, an ache in my liver, lightheaded, crampy stomach etc. But then when I go out or am at work and focused I go back to being me and don't give it much thought and no symptoms. I definitely have symptoms when my mind is on it, does anyone else? It's a bit like talking about nits and then we scratch!

8 Replies

  • Hi, I know how you feel ,I have been there like many others. Be careful what you read on the net because we all react differently. Maybe wait until the doctors confirm the diagnosis. Since you mentioned nits I now have to go for a scratch. I hope you get the news you want...

  • Thanks Brummi that made me smile about the nits!!

  • Yes me too, love the comparison with nits! Am in same situation and am diagnosed as asymptomatic PBC so no Urso for now. I have other autoimmune issues but no obvious symptoms of PBC except, like you, I itch and think now is this it? Time to go back to Dr ( I do have regular blood tests)

    There are others on this site in similar situation. Like you, I have 'obsessed' looking on web but as Brummi says be wary, PBC foundation is best and talk to them. It's good to be informed and look after yourself with diet etc as once you have it you have it, but it may not develop to full blown symptoms if lucky, but looking after oneself increase best odds . Hope it all goes well for you.

    Enjoy your work and if that distracts you that's good too.

  • Don't read too much into everything.. On the net. Even if your diagnosis is confirmed it does your head in at first. Join the PBC foundation they have been a godsend to me. Xx

  • Hi,

    I was the same when first diagnosed, and its pretty worrying what you find on there!

    I have a lot of symptoms, but its true that when you go through the day and focus on other things they seem less immediate. First and last thing, when youre less busy and more tired I find can be when theyre suddenly really noticeable, especially itching and liver/ stomach pain.

    Good luck and if you do read up on it online, do what I should've done a bit more of, read the how to help yourself and keep healthier parts, rather than the worst case scenarios! :)

  • Don't read too much into what you see on the internet. I felt exactly like you when I was first diagnosed 15 years ago. You can get the best advice from the PBC Foundation. Also if there is a group in your area go along and meet others with PBC.

    You might be one of the lucky ones with no symptoms.

  • Hello Bellalou10.

    I think when we are informed it seems likely that we have something that will never go away as in PBC it can be so easy to get wrapped up in how things might be.

    I stumbled across PBC during 2010 after seeing it in a library ref book. I never mentioned to the GP who at the time was doing various blood checks and then sent me for a scan. Had hoped the itch that I started with 24/7 early 2010 would just go away and then I'd be normal again. It didn't. The itch is definitely real if you have it with PBC. I was diagnosed with PBC Dec 2010 and couldn't believe that I was stuck with this for the rest of my life, moreso as I'd not had more than any temporary minor issues in over a decade.

    I did read up about PBC in the early days and still read the newsletters from PBC Foundation and Liver North but can't say I have acquired what could become an obsession. I do think the more we look into these thins, the more we can inwardly panic.

    I am aware of the commonest symptons (I still have the itch, better than in 2010 but it is still there. Fatigue I did have in 2010 but that somehow vanished during 2011), others you can acquire but I refuse to think about them.

    I do think at the moment you are attempting to come to terms with it all and you do need time to accept it and then start getting on with life as best as you can. My motto is that is I spend time thinking and worrying about what PBC might become I'll not spend time living and doing things I want to do so that would be time wasted. I resolved with myself long ago that I'd deal with things as and when as these things just might never occur so it would be time wasted meanwhile and to me that wouldn't be living. I am not far off 52 and I've itched since I was 45 and it's with me every day.

  • Hi, sorry I dont have any advise really just wanted to let you know you are not alone this is a great site and I am sure someone more experienced will reply.

    I can tell you I totally agree with you, I am the same I was diagnosed end of November and felt totally well since taking the ursofalk and being at home over Christmas I have been going mad with PBC like you sleeping and breathing PBC, well no sleep and itching like mad I also am convinced I now have brain fog, and dry eyes, fatigue and sleep problems.

    I hope you get some good advise from this site :-)

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