How can you go from feeling totally good before i found out to feeling this rubbish ?? If I had not had a random blood test last year i would be none the wiser feeling no different and i now i feel after my AMA came back as positive like its the end of the world my life has been shattered in tears all the time................. today in asda i wanted to scream out please somebody else tell me you have PBC help me, talk to me, tell me its ok to feel like this, I wake in the morning and for a split second all is ok then BANG it hits you like a ton of bricks and away i go again in tears and then ask why me ......... my poor husband is going thru it to, he does not know what to do how to be with me, he keeps trying to talk to me and all i do is scream at him we both feel so alone in this even though we both know we are not, I have contacted The PBC foundation and just awaiting my info to come thru.
I am 53 and so out going but i feel this has aged me in a matter of days......
Please help me..... i am in tears as i write this so sorry if it reads a mess
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gracesofia
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Hi there, I can identify with how you feel right now, I felt the same when I was diagnosed in August 2009. I too was diagnosed by accident and if that hadn't happened I would now be none the wiser. However, 3 and a half years on and I hardly ever get upset about having PBC. If anything, my life has changed for the better knowing I have it. I have met so many new friends who also have PBC, and I can honestly say, we talk and have a laugh and most of the time forget what brought us all together. I would image that at the moment PBC is taking over your life. It will not always be like that. You will stop being angry and upset and accept that you cant change it and once you have accepted that you can get on with your life as it was before. Sometimes you might have to make changes to adapt but it is not the end of the world. You still have a life, enjoy it. I was 46 when I got diagnosed, I am 49 now. My life is far from over and neither is yours. You're doing the right thing by contacting the foundation and getting on the internet. You're building up a support group who can and will reassure you and help out with any questions you need answering. You will be happy again, trust me
It's 11 years since I felt like you do at the moment, it's not an ice place to be but I was lucky and contacted the PBC foundation and the information they have compiled is so good ,there is life after diagnosis I hope you have a good hospital doc mine is at the QE in Birmingham.
You are not alone!!! I was diagnosed in 1999 when I was 25, also by random blood tests. BUT I had no symptoms until 2010.
My advice is to (within reason) forget you have PBC & LIVE YOUR LIFE!!!! Take your medication if prescribed & don't drink too much alcohol. Just be healthy but not over-the-top. You know, be sensible, but enjoy life to the max. Don't worry about things that may or may not happen, and don't change you!!!
I know this might be a struggle at first, but you will get there!!!!
Thank you for your answers. I know I am strong and tomorrow is the start of a new day. All i can say is I am sooo pleased I found this site just knowing that I am not alone and there are you wonderful people out there to talk to, that in itself helps me ............
Hi Gracesofia, I was diagnosed in November and I can fully identify with how you feel right now. I remember the day after diagnosis walking around a supermarket and repeating in my head over and over again I have a chronic liver disease, it seemed surreal. You walk around in a bit of a days for a while, then you start to get your head around it, as others have said once you come to accept this thing called PBC you do start to feel a bit better. Try to read information on this site, if you google pbc in a lot of outdated information comes up and you can scare yourself witless (unnecessarily). I too was diagnosed from a random health check, like you I had felt well, I understand the feeling of being knocked sideways and the bottom dropping out of my world. I was in tears when I wrote my first post too. Kind members on the site replied and helped me to get through the horrible early days. It is still early days for you, members here will gladly su[pport and answer any questions you need to ask. Have you seen your consultant yet? Have you started on URSO? I felt very reassured once I had spoken to my consultant. It helps to read some of the old blogs and questions on this site. Keep in touch, stay strong.
Sorry, last post should read you walk around in a bit of a daze.
I am fortunate that i work at the hospital where my consultant is and have been having regular chats with his staff grade, I have a CT scan on friday and then my appt on the 28th, as the ultrasound was inconclusive but the blood results came back on friday confirming PBC, they did say it may mean just being monitored but it will be down to results of scan and what my consultant says. My LFTs have been coming down over the last 2 months especially my phosophates ( sorry re spelling) ALT and Bilirubin are down to but i know this is not always the case. I have no symptoms which i find so hard to deal with to as only a few months ago i was walking about unaware of this, but since i have been diagnosed and some time before friday i seem to have every symptom going, so strange what the mind does to you and this is what i have to keep telling myself. And so many questions: do i change my diet? do i alter my life style? how should I be? the list is endless again as a few months ago I was eating what i wanted and when i wanted, I have not had any alcohol I dont smoke and have come off HRT as they seemed to think it was my liver reacting to prescribed drugs.
These last few days have been horrible but I will be strong and live my life to the max x
I've never been informed not to eat anything differently. (Alcohol speaks for itself I think. I was only an occasional drinker prior to my first abnormal LFT in 2010 and decided there and then to not have anymore and haven't since.)
One thing that I think does make sense is to try and limit fat intake in the diet as with PBC due to bile acting like a detergent to break up fats in the body, I have this theory that having too much (of the wrong kind of fats like hard fats (saturated)) only means that we need more bile to break it up, bile that then needs to travel via the bile ducts that are showing damage. Urso as you prob know helps to break up fats, especially cholesterol.
But at the end of the day, I still eat what I want. I have found for many years that I can't eat a large portion of food and stop when I have had enough. I think now with PBC this is sensible. I have found on an odd occasion that when I've had a bit too much at teatime and it was served later than normal (before 6p.m) then I have felt it later at night. I find my best time to eat is morning up until around 2p.m. I do start to feel hungry before noon even after breakfast so seems for me that is normal as in the quote, "Breakfast like a Queen, lunch like a Princess and dinner like a peasant"!
I find that my usual exercise and being on the go is better for me. Altho' I do only itch at night, I find that by trying to keep busy up until around 9p.m., I do feel that much better. I also think that being mobile if possible (difficult for some who are fatigue a lot) can help as it helps the system flow best.
I too at first felt almost guilty (if you know what I mean) that I didn't have more of the documented symptoms and began believing that I did....I didn't....and it wasn't long before I came to my senses
I started to get ill when I was 57 and feel as though this has taken the last best years of my mid life off me. I still ask why me and why no one is doing anything about it, why did I get it and none of my so called friends who have let me down badly get it, it turns you nasty at times ( nasty thoughts ) my OH cops it when I get moody, I don't want to go out anymore, can't walk properly, drop everything, keep messing up when I try to do anything, I am totaly fed up at times. I think the HRT thing is a load of bull, they just want us all off it, my GP has been tring to take me off it from the day I was put on it by a gyno consultant, they just don't like or understand HRT, some of them should need it, Last one to have a go at me was at the bone clinic, a very young lady DR whe said Oh I don't believe in HRT, I just thought you will in a few years dear.
Sorry for the grumble, I just felt like it.
XXX Linda who is feeling down and in pain today X
Hello gracesofia.
If you weren't aware of having PBC prior to a random blood test then if possible I'd try to just get on with your life as normally as you possibly can just in case there ever does come a time when you are starting to be aware that you have PBC.
I was informed I had prob had PBC ' a few yrs' prior to starting with the itch 3yrs ago this month and prior to that I had thought I had nothing wrong with me. Had I not have started itching I'd have been none the wiser and just continued getting on with my life feeling I had noting wrong with me. (I wouldn't think I did have anything wrong with me at all during the day until evening when the itch starts.)
I think once being aware you have something does change how you feel big style. I too went through allsorts of thought prior to diagnose Dec 2010 and in those 8mths I kept thinking, here's another blood test and it'll be something and nothing and I was still convinced I just had something temporary that would go away once I had sorted myself out at work (was overworking, thought the fatigue had at the time and then the itch were the cause. Quit my job Aug 2010 with my husband's insistence and did feel better by the time I had the AMA blood test in Oct 2010 but the itch persisted).
I had the AMA blood test and altho' I wanted it to come back as negative, I did somehow know it wouldn't. I tested positive and was diagnosed PBC and started on urso Dec 2010. That's when it did sink in. I think when you read about PBC the further you read on the more it gets one thinking and then you go through allsorts of emotions as to why me and then wonder 'how long', well I did.
I put that aside I have to say after some time and started to get on with life despite the continuing itch. The itch reminds me PBC is there all the time but I now refuse to think what could happen years down the line, I'd rather live now than worry about it all the time and miss out on living the life now.
It might not seem it but for me I think it is a sort of bonus as it reminds one not to take life for granted and to get out there and live it and I'd like to think that I can live a better life now than I would have prior to diagnose.
What you are feeling is totally natural. Please try not to panic... easier said than done I know....but its only natural that you feel anxious....But it will get better....There is a light at the end of the tunnel!!!
Your story mirrors mine, same way of finding out, same lonely, hopeless, desperate feelings and we are the same age. I am sure each and everyone of us on here can say they have felt exactly the same as you when they found out they had PBC.
I struggled at first to accept my diagnosis, I became very depressed, felt very alone and hid my head in the sand...I did not want to know... I eventually plucked up courage and contacted the PBC foundation, I found this site (May12) and have not looked back since...its been an absolute god send. I now know I am not alone and have a more positive outlook on life. Everyone is so friendly and helpful.
I would be fibbing if I said it has been easy because it hasn't you just have to give yourself time to adjust. I found the fatigue really tough and would fight against it until I eventually collapsed in work. My GP told me that my body was telling me enough was enough and shutting itself down. She told me I needed to listen to my body and if I felt tired I was to give in to it and rest. It was really hard to adjust but over time it does get easier..BUT you have to give yourself time.....If I feel tired I rest..sometimes I may sleep for 3 hours other times a cat nap is enough but I wake feeling refreshed and ready to take on the world. It does take me longer to do things but SO WHAT ....if it takes me 2/3 days to clean the house instead of a day.... if I have to take a few coffee stops when out shopping instead of shopping like a whirlwind. I have good days and bad days but tomorrows another day.
My symptoms are fatigue, painful joints, bones and muscles. My hands and feet and ocassionally elbows swell. I also suffered with bad indigestion but that has gone since I was prescribed omeprazole. I am still to find a painkiller to give me sufficient pain relief though.
I think I may have had PBC for almost 12 years before I was diagnosed. with PBC in Jan 2011. I had suffered with painful joints, bones and muscles following the birth of my 3rd child. In Feb 1999, 10 weeks after his birth I began experiencing excrutiating pains in my hands, elbows, hips knees and feet. I could not pick him up, I had to use a scooping motion to get him into my arms. My GP thought I had viral arthritis and made a referral to a rheumatologist query rhematoid arthritis...that referral took 3 years to come through and was an absolute waste of time...he told me I did not have rheumatoid arthritis, could not give me any explanation for the pain I was experiencing and sent me on my way suggesting I could try and loose some weight ...I was 11 stone and 5ft 6in so hardly obese..I was about 9 1/2 when the symptoms started...I lost all faith in the medical profession after that and self medicated until Aug 2009 when out of pure desperation I went back to my GP, who referred me a 2nd time. I was seen within 2 months, had xrays, scans, MRI and numerous blood tests. I was due to go back for the results in Jan 2010 but the appointments kept on being cancelled. I kept on being told I was not an urgent case... I have not been forgotten....backlogs etc etc. In April/May I received a letter from the gastroenterology dept confirming they had received my referral and would send me an appointment in due course. I thought there had been a mistake.. as far as I was concerned I did not have anything wrong with my stomach....a phone call confirmed they had actually had the referral from the rheumatology department querying a result from one of the blood tests that had been carried out. My gastro appointment came at end of Oct beginning of Nov 2010...the registrar told me I had PBC. I was told I needed a CT scan, an MRI, more blood tests and a liver biopsy (not all consultants ask for liver biopsy). When I got home I read up on PBC on the web...big mistake ...it frightened me to death...I thought my days were numbered and I would not see my children grown up... I was absolutely devistated...the next few months went through in a daze. After all had been done I went back for the results at the end of Jan 2011 when it was confirmed I had PBC. I took my sister with me because I was in such a state..The consultant was brilliant he took the time to explain things to me (not that I was able to concentrate to take it all in because I was so afraid) he confirmed I had PBC... told me he would give me medication (URSO) which would help slow down its progression.... advised that even though I had PBC it did not mean I would get cirrhosis it may never turn into cirrhosis...and assured me that I had a life to live, there was no reason why I should not go on to lead a relatively normal life with a normal life expectancy (I recently heard of a lady who was diagnosed at 52 is now in her 80s and still going strong). 6 months after my diagnosis and being on URSO medication the levels in my bloods had reduced and 12 months later they were almost back to normal....life is on the up.
Few tips picked up along the way...be careful of over the counter medicines because they are broken down in the live..... Diet - A low saturated fat, low salt diet, some also say low protein...but my consultant told me not to cut out all fat as our body needs the good fats....
I was never a heavy drinker... 1 or 2 glasses of wine birthdays and christmas, my consultant told me a glass or two once in a while will not harm....its not the alcohol that has caused the PBC its my/our immune system. You'll be suprised how many people you'll come across who will automatically assume you have a drink problem as soon as they hear the word cirrhosis.
Try and be positive...give yourself plenty of time to adjust and come to terms with your diagnosis....you'll be fine....
.... and your husband won't get so much ear ache (ha ha). Having the support and understanding of loved ones is so important for you at this tough time.
I was diagnosed with PBC in Sept 2012, and I am 60 years old. For the first two months I was depressed too because I was going to Google sites that had outdated information and I wasn't listening to what my Doctor told me. My Doctor specializes in PBC at the University of Nebraska Medical Center. The Medical Center performs many liver transplants. When my Doctor started me on Urosodiol, he told me that as long as I take my medication I will live a normal life span, the medication has decreased the need for liver transplants in PBC patients, and it retards the auto immune response in the liver. I know it is scary to have a chronic illness and I hope this makes you feel better.
So sorry you feel so bad about this. What stage is it? If it gelps you I am 62, was diagnosisd in 1991 initially and am still fine.....I do get a lot of pain and nerve pain but that is fibromyalgia..sometimes this can be confused with pbc....because you were told you had this does not mean it will always come to full pbc in your life time.....your blood test was like mine...out of the blue when testing for something else...and to be honest I rarely think about the illness. I came onto this site to ask about antibiotics with pbc because I like to try and keep an eye on things like that at least.
Please do not worry....it might never be that bad. I dont take any medications for pbc because they all seem to disagree with me...and I am not sure by evidence quoted that they work...but thats just my thoughts....
Soon you will come to terms with it....and try and relax because tension plays havoc with your thoughts and health.
I found out I had PBC through random blood test, which at first I wished I never had, I was 24 years old and now 9 years on I am still symptom free, the first few years will be hard for you as you will keep thinking about it, but then you just get used to living with it.
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