Feeling a little frustrated

Hi everyone. Was diagnosed with PBC just over a year ago after blood tests and biopsy. On Urso and my blood tests have stabilised. Have had episodes of liver pain and had a scan last yr which was clear.

My husband has dragged me to Drs today (I'm a v reluctant patient) because I've got constant pain over my liver, sometimes sharp but usually griping like labour pain. Also exhaustion a lot worse and struggling to keep going! I'm v determined, go to gym, dog walk, housework etc..

Dr rather dismissive, doesn't know anything about PBC, I've yet to see a gp who does! Shrugged when I told him about my exhaustion told him I'm also struggling to lose weight (about a stone to lose) and he just said "aren't we all"

Asked him if PBC causes liver pain, just said he doesn't know. Suggested I ring my consultant (who I only see once a year) and it's incredibly hard to get to speak to him...I'm feeling v unsupported and a bit down if I'm honest. Really do try to be as healthy as possible and not let this illness define me but just needing a bit of support and to feel I'm looked after!!

Arghhhhhhhh!!

Sorry, rant over. Any advice as to what to do, questions to ask etc would be v appreciated. I'm 47 yrs old. I'm in the UK

Thank you! 😬

Caroline-12,

11 Replies

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  • Hi Caroline-12

    What an insensitive doctor. I think they get like that when they know there is nothing they can do however silly remarks over the weight issue are unproductive!

    I have only just discovered (courtesy of Brummi) that you can telephone the hospital and ask for the secretary to your specialist. Leave a message and you will get a reply back via the secretary. Alternatively if you draw a blank on here contact the PBC Foundation who I am sure will be able to help you.

    I have read that some use a warm hot water bottle over the painful area which can ease the pain. As to the exhaustion I think sometimes we can be in PBC denial and push ourselves to hard, pace yourself maybe give the gym a miss for a bit and increase the walking see if it helps. I am pretty certain I read somewhere that 30 minutes is the optimum exercise time anything over does not make any difference.

    Hope someone comes along soon who can be more help.

    best wishes

  • Thank you v much for your reply. It does help to speak to some-one who understands what it's like.

    Yes I will try speaking with the secretary, thank you!

    Perhaps you are right and there is an element in me that is in denial. I've been a stay at home mum to my kids, one of whom is Autistic, and now they are older I'm ready to return to work (hence the gym, dog walking, healthy eating...I'm only 47, I want to get out there!!) Perhaps you are right...I'm overdoing it?) I will try slowing down a little and pacing myself (I'm not a very patient person when it comes to things like this! I'm a terrible patient! 🙄)

    If people are using hot water bottles then at least that answers my question and PBC does cause pain? Neither my gp or my consultant have ever acknowledged this!

    Thank you once again,

    Best Wishes

    Caroline-12

  • Not suggesting you are in the later stages, but this list of PBC Symptoms from the Mayo Clinic website might be of use to you (as a print out to show your doctors). "Hot water bottles" work well for the pain.

    mayoclinic.org/diseases-con...

    Di

  • Thank you!

    Best Wishes,

    Caroline-12

  • Hello Caroline-12.

    Now I find it a bit odd that your GP has suggested that YOU ring the consultant. GPs can ring the hospital themselves and speak to a consultant usually for advice.

    If I was you I'd dig your details from your consultant out and ring his/her secretary and ask if either for advice or an appointment.

    I don't encounter what is said to be liver pain. It's actually not supposed to be the liver from what I read several years ago (I was diagnosed December 2010, out of interest my bloods though stuck between a certain figure since dropping after starting urso are not normal still but considered OK). There is a nerve running from our neck, phrenic nerve and it is said it could be this that causes the pain from an inflamed liver. You'd have to ask your consultant to verify this though as I am no doctor of course. I think it figures this as it is said a patient having liver biopsy can encounter a sharp pain in the shoulder as the needles impacts. (I've never had one, was no need as I was diagnosed with symptons (itching!) and bloods plus it was found I had antibodies (AMAs) in a high titre).)

    I was 46 when I was diagnosed with PBC too.

  • Hi there, thank you for your reply.

    Yes I think that could be right about the nerve, I do recall having a lot of pain in my shoulder during and after the biopsy..that would make sense now.

    I was v surprised aswell that I've been left to call the consultant. Couldn't help feeling the doctor was very blasé about it all and uninterested. I felt quite upset and unsupported when I got home. I will ring the Consultants secretary and talk to her.

    It's good to hear that the Urso is at least stabilising your PBC...long may it continue for you!

    Best Wishes,

    Caroline-12

  • Hi Caroline, firstly id like to say never be sorry for a rant, its a great way of releasing our worries about our illness and at the end of the day we are all in the same boat......I was diagnosed with PBC when I was 21, being 42 now iv had it half my life. In the beginning I went through lots of different emotions and was kind of all over the place. Back then there wasn't the support networks that are available now.

    You mentioned the fatigue, this was always a major factor for me, and at my worst I was sleeping for 16hrs a day. I would wake in the morning, take my baby to school, go to work (which was such a struggle, id be falling asleep at my desk) get home, do homeworks and snacks then fall asleep until it was time to make dinner. As soon as dinner was finished id be in bed for the night. No quality of life whatsoever! And it was depressing to say the least. This went on for well over a year then I decided enuf was enuf.

    I went on a 'Heal Your Life' weekend which is based on the work of Louise Hay and it totally transformed my life. I dragged myself out of the hole I was in and took a proactive approach in healing myself from within. It took a few months and with regular practice of self love, affirmations, meditation and believing in myself I now sleep like a regular person lol.

    I know how scary the idea of PBC can be but you need to remember more people die with PBC and not from it if you get me. I don't even think about it now and if you seen me you wouldn't know I was sick. Well I do9nt class myself as sick.......I just say I have a very confused immune system and this is what I stick to. I have PBS, Systemic Schleroderma, Raynauds, Arithiritis, Granuloma Annulare and Osteoperosis.......all of which are down to my silly overactive immune system. Silly Silly System!

    I now work part time as I love my job but also love myself. I listen to my body and if im feeling tired I sleep. A wee hour normally does the trick and I don't care what time of day it is or what Im supposed to be doing. At the end of the day if I don't take care of me I cant take care of anyone else, babies included.

    You mentioned liver pain.......yes I know where your coming from. Iv been getting this for the past 10 years and it is a thing. My docs all say that you cant feel pain in the liver, but hey ho they don't have PBC and I disagree with them. But its just a thing and the pain does go away. Have a lay down and chill out, don't let it worry you as stress only aggravates all your PBC symptoms.

    I hope you get something from my reply, and always feel free to get in touch.........were all in this together, love Suzanne x

  • Hi Suzanne, thank you, thank you, THANK YOU for your reply! 😊

    Just what I needed to be hearing right now...not only some-one who is going through it, but some-one who is coping with in such a positive way and getting on with their life! I thought this was me but in fact I think I've prob been attacking it, rather than acknowledging it and then getting frustrated when things don't go my way! Feelings such as "I'm too young for this, I don't want this pain, I want to work, I'm not giving in to this exhaustion...all negative comments to show I'm in charge of this and coping!! (Yeah, right!!)

    So...I'm taking your comments on board!

    Right...I'm off to research Louise Hay!

    Thank you once again. So nice to know we are in this together!

    Best Wishes,

    Caroline-12

  • Try to contact these people. Maybe they can help you find a doctor that knows what the hell he's doing. Good Luck

    pbcfoundation.org.uk/

  • Hi Caroline,

    I had PBC for four years now.

    One month ago, I had my second liver biopsy which went fine but after a week I had severe pain near my liver. I did not have that pain ever before. It was more than a Labor pain. I went to emergency and they did all scans and found nothing abnormal. They put me on Strong anti inflammatory ibuprofen 600mg And after complete bed rest for about 10 days and those medicine, the pain is gone. I started to do my routine job including gym. I don't have anymore that pain but sometimes I feel a bit weird near my liver. I cannot explain the feeling but there is no pain.

    May be ask your doc to try some strong anti inflammatory medicine.

    I hope this helps

  • Thank you! I'm going back to dr next week so I will talk to them about it. Thank you for your reply.

    Here's wishing you well! 😊

    Caroline-12

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