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Hi I have recently been diagnosed with PBC. I had for th...

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Hi I have recently been diagnosed with PBC. I had for the past 6 or 7 years been visiting different specialists who could not pinpoint the reason for my tiredness or why my red blood cells were, in their words, typical shape of an alchoholic. I am sure that I do not need to tell fellow sufferers that I very rarely drink! My most vivid recollection in all the time I was ill was telling the Dr how very tired I felt and although he was very sympathetic I felt he did not understand the depth of my tiredness. When I told him how tired I felt I remember saying but you are not listening I am really tired. Needless to say the tiredness still continues and on bad days I have just had to learn to stop sit down and be patient until the tiredness goes away. I suppose I want to tell fellow sufferers that they will know themselves how much energy they have and on good days when you feel more "normal" to use the energy you have sparingly and enjoy the energy you have. yours Julie.

[i:01abf986d5]This message was automatically imported from the original Patient Experience[/i:01abf986d5]

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  • Guest
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    Posted

    Hi Julie I have just read your comments and though Id reply. I was diagnosed with PBC nearly a year ago and Ive only meet one other person with it while on holiday so I didnt really get to talk much about it. I think I have been blocking it from my mind but sometimes I fell I want to cry and I mean really cry but I stop myself as I think there are people worse off than me. I dont know how I got it and its seem a bit of a mistery to the medical profesion I suppose my name was on the bullet, I do get tired but I fight it as I want to carry on as normal, I get dizzy sometimes and fell a bit faint with tingling in my legs I dont know if that is par for the course or just me.

    its nice to know Im not on my own although I wouldnt wish it on anyone. I think you must have the same problem as me because when I tell people what Ive got they automatticly think Alcohol.

    I used to have a few drinks when I was young (im 54yrs old) but less in later years and down to special occasions now although there have been times when I have felt so down with all of this I could have drunk myself under the table. I hope you are managing your symptoms better than me, its not the tiredness that really bothers me its the itching, it nearly drives me up the wall.

    I better finish now or this is going to turn into a book, best wishes suzanne.

    [i:f4139e20b6]This message was automatically imported from the original Patient Experience[/i:f4139e20b6]

  • Guest
    Guest

    Posted

    Hi everyone !

    i was diagnosed with PBC two weeks agoe and im not sure how to feel about it! i am a new mom and my son is now 7months i suffer with gall stone that are due to be removed but since the PBC was discovered it has delayed things a bit, i am 29 years old and feel a bit cheeted out of my life some wot, is any one else this young with PBC?

  • Guest
    Guest

    Posted

    I was diagnosed with pbc in my mid thirties, I am now 53. The most important thing that I can emphasize in managing this disease is to learn to conserve your energy and to not beat yourself up about the things you do not have the energy to do. You have to learn to rethink your way of doing things. The way you feel today may not be how you feel next week. Do what you want to do, but keep in mind that if you over do you will have payback. So make sure it is worth while. If the fatigue is extreme don't try to do everything, rest and don't feel bad for doing so. If you are going out to meet friends don't houseclean that day or do laundry. I was always a very active person and the hardest lesson I had to learn was to change my lifestyle and way of doing things. Silly little things can make a difference, don't carry a big heavy bag when you go out, it uses energy to tote around. Do things in stages, most chores do not have to be finished in one go. When I was first diagnosed I took a lot of flack,\" If you would just push yourself you would feel better\". I can't tell you how often I heard things like that. Don't listen! The best thing I did was take my husband to a support group meeting. As people spoke and used the exact words and phrases that I so often had about how I was feeling such as ,\" I wake up feeling like someone has been beating on me all night, or I feel like I have been hit by a truck\". My husband and family truly understood for the first time. It helped that we also all looked alike with the pale completion and black circles around our eyes. It helped me realize that I was not crazy about the way I was feeling. On the way home my husband apologised to me and said that he really did not understand before what I was going through. Having his understanding and support has been the most important single thing in coping
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