im new to pbc

hi I was diagnosed with pbc last august I had a fibroscan in December it was 9.5 (don't really understand what that means ) I have suffered with itching, exhaustion, for about 8 years but was putting it down to age and overdoing it, but it became so bad last year I had t give up work as I developed rhumatiod arthritis,i know some say take gentle exercise but I have a job some days to make myself a cuppa im not a lazy person and I do push myself every day. I finf it hard to explain to family why im feeling like this I feel the look at me as if Im making it up its so hard to explain to everyone how I feel I would e grateful of any feedback from someone as I feel I don't have anyone I can talk to about this

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  • Hello! Sorry to hear about this, but you have come to the right place. I am in the US, so we don't have fibroscans here as much as you do in the UK or Europe. I was diagnosed by biopsy, so I can't tell you what that scan number means. The fatigue with PBC is the worst, in my estimation. I have never had the itch, which I am very grateful for. It is hard to explain to people, because overall, we look well. They think we are just complaining or being lazy. My family has been very understanding, mainly because my Mother was chronically ill, so my husband and my father both get it. But people at work have been less understanding. Luckily, I work at a company that has been very kind to me, but employees and fellow colleagues don't always get it. I also have the added problem of no thyroid, since it had to be removed due to cancer. So I am taking meds, but they just don't go through my system as well. I actually chew my thyroid replacement. So this is the place to come to vent. We have all been there and understand what this means. Our disease isn't as common as some, so we need to stick together. Feel free to PM me if you need to.

  • Also, I just went through surgery to remove a fibroid and an ovary as well as a D&C because I am anemic. Normal people would recover quite easily, but I am struggling due to the PBC and other issues. So with your arthritis, you are double dipping too.

  • NOTOR DJP. See we all get this lack of understanding I do not suffer so much of fatigue, maybe of the Vit A,D, E &K B Cal, Vit D an Magnesium I take. I have a very expensive body. Here the Medical Aids will not consider it a chronic disease, because of its rareness. For me the itching is become worse and worse.

  • Regarding the fatigue, I'm with You there - it's dreadful at times and I have a mild form of the illness! Some time ago I read a patient plus clinician's point of view about the devastating effect this can have on an individual's whole life. I also had found it difficult to explain to people why there were times when I just couldn't function or be there! I posted this story to them and afterwards found immediate sympathy and understanding from family and one or two other people within my social circle that I sent it to. It's late and I'll have to search for it but I'll send the link to You as soon as I can. Take heart, hold on grimly to Your self respect (my mother was desperately ill and still found strength to teach me this).

  • Hi, I have had debilitating fatigue for a number of years. In 2010 I was medically dismissed from my job as a health visitor. It has ruined my life really, as I spend many hours sleeping. Unable to do many things, even a walk around a supermarket can often have to end half way round the shop. Its like someone cuts your power off. I do have some good days, but then I tend to overdo things and suffer later.

    Unfortunately exercise is not helpful with pbc fatigue. This is different to chronic fatigue (M.E). I am currently taking part in a medical research trial for a treatment for fatigue in pbc. The doctor explained to me that the anti mitochondrial antibody is responsible, on a cellular level, this disrupts the cells ability to get energy to the muscles ( I have massively simplified this, but I think that is basically right??). The point is rather than being due to something in the brain, like depression causing fatigue it is a biochemical problem which is part of the disease aetiology. The drug they are trialling is rituximab which is currently used for rheumatoid arthritis, among other things. It is hoped that by ' dampening' down the immune response it may improve the fatigue. I think I've had the placebo as I had no noticeable improvement, but they have had some positive feed back so far.

    I empathise with you greatly, and am sorry to hear your colleagues are not sympathetic to your situation. I think the best thing is to accept your limitations try not to over do things. Rest whenever you can, and learn to get used to a messy house!!

    I hope you have help at home, my husband is a hero. He works fulltime, does cooking, washing and general vacuum ing etc, but he's not to great at housework!! So really with 2 young teen boys we live in a pig sty!!!

    I hope your health improves. Also if you Google fibroscan result card it will show you what a reading of 9.5 means, sorry I can't seem to cut and paste with this phone, so can't give you a link.

    Best wishes

    E

  • Sorry HD 60, I mixed up some of the things from your post and someone's answer, anyway the info is the same!!

  • Here is a link to information about fibroscans and interpreting the results.

    hepatitiscnewdrugresearch.c...

  • hepatitiscnewdrugresearch.c...

    I found the link, this has details of the scorecard. This is actually a link about hep c, but the scorecard is the one for all conditions. You need to look at the result for chose static illness ( sorry I can't spell that). I think 9.5 is F2 meaning some fibrosis, it does say however that at that level it isn't as accurate as at more advanced levels.

  • HD 60,. I feel for you, because I know that feeling. People have little sympathy for us, because you are just being told to stop scratching, use a cream . They think it is all in our heads. Maybe if it was not such a rare disease, but where I live, people understand not much about auto immune and PBC. Think we should all go and life on an island all of us

  • I am with you hidden illnesses are horrible especially as like I do ....look so well... The fatigue is horrendous I constantly think I'm going to pass out when I hit my brick wall. Cause that's how it feels dizxy sick & can't put one foot in front of the other. I've learnt to call it an episode to others especially my other half who I work with. When I have an episode he knows that I've really had it & only going to bed will do. Call it fatigue or tiredness & he just used to say come on were nearly there keep going. It's taken a long time to educate him. My house looks like a bombs hit it & my ironing pile is like mount Everest. Which makes me depressed but others don't see that as I avoid having people round. I used to be so houseproud. I'm sure I'm only still working cause I'm self employed & can juggle my hours. I don't think anyone would employ me I'd be too unreliable. I've just gone on vit D, it seems to be taking the edge off a bit they're checking vit A & K next month. So I'm hoping that all the vitamin bits help.

  • thank you for your reply your right that we look so well (I do anyway) its my children and grandchildren don't get it I suppose they are so used to seeing me on the go all the time now they see me asleep or struggling to make tea or cook for them I often cry when they leave. the worst part for me was giving up work im very independent. I don't know about vitamins or which to take as im still learning I see my specialist in a few weeks so I hope I get more info then.

  • Hi HD 60

    This is my 2nd attempt at posting the link I promised you. Hope you get it this time

    BMJ2012; 345doi: dx.doi.org/10.1136/bmj.e7004 (Published 22 October 2012) Cite this as: BMJ2012; 345:e7004

  • Hi HD_60, I can relate to the fatigue issues! I have used spoon theory to explain fatigue to people, mostly close friends and family. It seems to help them understand and be more sympathetic.

    I have found, however, that it is easier not to discuss it with the people I work with. I just smile and carry on the best I can. I once worked with a girl that had just been hired at my company. (This was a previous job, my current job is awesome). She said that she was very tired and thought that it might be because she was just diagnosed with underactive thyroid. It was just a comment that she made in passing, no big deal. Well, she was fired a few days later for being 5 minutes late to work. In all honesty, the boss just didn't want to deal with people that were "tired".

    Some people just don't get it no matter what you say. I have one close friend in particular that I have not spoken to in months. She kept getting personally insulted every time I said that I was too tired to do something. She would invite me out, ask me to run errands for her, or to stop at the store and pick up things for her. I honestly was just trying to survive the day and had to start saying no. Well, she just could not respect my boundaries and tried to bully me into doing these things for her. She insulted me and called me names. I finally told her to never speak to me again. At least that was something she could understand! I've been better off since.

    I know it sounds very negative, sharing these experiences. But, it really made me look at my life and ask myself, who and what really and truly deserves my time?

    Please be kind to yourself. You are not lazy at all. Autoimmune issues and RA can really take the wind out of your sails and it's not your fault in the least.

  • Hello h_d 60,

    Can I ask if you have already registered with the PBC Foundation?

    If not is is completely free of charge to do so and can be done by either visiting our website or contacting our office on 0131 556 6811 or email info@pbcfoundation.org.u and we can arrange for a pack to be sent out to you.

    The PBC Foundation have a Helpline Service where you can have a chat to one of our team in complete confidence and you can ask them any questions you may have.

    I have included these details below for your information.

    Best wishes

    PBC Foundation

    Website :www.pbcfoundation.org.uk

    Email :info@pbcfoundation.org.uk

    Office/Helpline :0131 556 6811

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