60 year old granny.thought I was in good health. Then PBC TOOK OVER MY BODY. I didn't. Have health ins. At this time and it had been awhile since I'd check my health..So I went to human services.went to see a doctor checked my blood,she said my blood count was not good. At this time my card was no good OBAMA KICKED IN. So I had to wait 2 months before I could see my Doctor agin. in the meantime the symtoms started to kick in mind you I didn't know I had PBC YET I started getting the tops of my legs really itchy I tried not to scratch ,little by little it was getting all my body parts but at night only, day was good nothing.It got so bad on my legs below my knees that I went to the ER 3. Little bumps the doctor there said I had I forgot but it's little bugs all over your body,she wanted me to buy this human pestaside and put it all over my body. My freind said you don't have that. I didn't buy it.my freind bought me some kind of tree oil stuff to put on it helped so much.then I started to get really tired all the time,started to loose weight didn't want to eat got weak . Finally got to see the doctor agin.got a sonogram on my liver it showed scaring. Next biopsy. Confirmed. PBC, MY HEART HURT HERING THOSE LETTER .PBC LIVER.I have a liver doctor,my doctor now I have autoamune hipatitis ,osteoparosis .taking all this medication .i feel like I'm not in my own body anymore .its just yo much to put down in this thing.

4 Replies

  • Yes, dear, it does 'suck'.

    No one, when learning they have PBC, says 'Wonderful'. We all struggle initially with the diagnosis, the disease, and the symptoms. Then, we struggle for acceptance - because PBC neither has a cure nor goes away.

    Please know that you are not alone. We've all been where you are. In time, you will develop your own coping skills. This site is an amazing source of information, support and understanding which can be a great asset as you come to terms with having PBC.

    I know this will sound like an impossibility now - but please do try to calm down and not to stress. Stress wrecks havoc on the body, and with your diagnoses, your body's already stressed enough.

    Wishing you peace.

  • yes I know how you feel! I have also been diagnosed with PBC, fibromyalgia, osteoarthritis and it feels like more. I fight with my body everyday to keep going, I think it is trying to evict me. It is very hard people do not understand how UN normal we feel. Let us hope for the best and keep fighting, what alternative do we have?

  • PBC-SUCKS, sounds like you are experiencing the same issues most of us have had to deal with. I am late 50's and was just diagnosed in June. I had suffered with the itching skin on my lower legs for years and tried about every lotion available with no improvement. They are still covered with scars from scratching to the point of breaking the skin and causing sores. I chalked the fatigue up to my demanding work schedule with special students. For me, the diagnosis answered nagging questions about my health.

    Obamacare was both curse and blessing...it sent my prior insurance costs to almost 3x my house payment, so I had to drop insurance that had been held for 9 years. New insurance through the exchange was purchased with higher deducts and less benefits, but I was covered when the diagnosis was made.

    This disease is both frustrating in day by day living and brings major life changes. For me, everyday I have to slow down my constant pace and take time to rest whenever it is available. I don't like not being able to do what I have done in the past. I just finished a 4 day weekend when I usually took care of tasks that don't get handled in the day to day living. I can point to only 1 task that was done during the 4 days...the rest of the time was spent resting so I had the energy to work today.

    Talking about changes...I now have 4 different pill boxes to keep up with all the meds, vitamins, and minerals I now take daily to keep some physical balance and the energy to work. I kept forgetting if I had taken certain meds, so I got a system that would help me remember. Many days, I feel like my body betrayed me somewhere along the line...I followed healthy habits and care and it got sick anyway. Now, I monitor attitude and stress levels and try to be the duck that lets the water roll off its back when it gets dunked under by circumstances. Do I succeed every day? No way, but I still try anyway since stress makes things worse.

    Share your feelings with those who walk where you do. This forum is filled with wonderful people who will listen and respond with suggestions and ideas that worked for them. Welcome to the club you never intended to join!

  • Don't let it get to you. I eat chicken and fish only and low fat diet. Made a lot of difference to me. Also exercise as your body will allow and rest when it tells you too.

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