PBC fatigue and nutrition

Hi. I have been recently diagnosed with a cross over condition of PBC and Auto Immune hepatitis. After working for 22 years without a day off, I am finding the fatigue extremely difficult to manage. I haven't seen my consultant for further advice yet, so can anyone help in the meantime? I am guessing that diet may offer some improvement but would just be comforted to know that I am not imagining this....

40 Replies

  • Hi I have found reducing carbs and sugar helps me. Was the fatigue a symptom before diagnosis?

  • No. I have been Zebedee for the last 40 years, now I feel like Ermentrude! Only Magic Roundabout fans will know what I mean. Thank you for taking the time to respond though. It really helps.

  • You're not imagining the fatigue. Some people have it worse than others. I feel like I could sleep all day especially after a night of not sleeping well (or at all sometimes) because of the god awful burning and itching. That combined with the general fatigue that comes with any liver condition has been hard to deal with.

    I think there is a connection between liver issues and gluten intolerance. I cut way back on my gluten intake and have noticed that I feel a bit more energetic. Anytime your body is having a hard time digesting something it is going to effect your energy level. I also have less digestive problems

    The fatigue magnifies any other symptoms that one might have...

  • Interestingly gaby1011 I was only reading yesterday news bulletins from the Mayo Clinic (I recently signed up for their bi-weekly newesletter online) and their view is that unless a person has diagnosed coeliac there is no need for anyone to live wholly gluten-free. I myself do buy some gluten-free products (SR flour for one) but I can't say for myself it has made a big difference. I have thought I don't overly-eat much in the way of wheat products as that is what can cause some people to have a reaction to.

    I think sugar can play a big part in the liver and perhaps that is another factor.

    I find it annoying that where eating is concerned there doesn't seem to be that much information out there as to what might be a good idea to really cut back on or avoid (alcohol is common sense) and when I asked the consultant at the hospital in my early days of PBC he just said to eat whatever I wanted and added, 'the liver likes calories'.

    One thing I have noticed though is that eating raw fruit and vegetables for eg I somehow tend to have a worse night of itching and I am of the thinking that perhaps the body then has far too much effort to put into digestion following. I had a salad (no dressings) for evening meal last night and though I have always enjoyed food like this I have found that there does seem to be this pattern of itching following these.

  • Peridot - You're absolutely right. At first they told me I would benefit from as many raw and steamed vegetables (especially greens) I could eat but after ingesting the raw ones my night itching was worse.

  • Hi Peridot

    Before I was diagnosed w/PBC I did some research to find out what might be causing my itching. One of the conditions that kept popping up was Celiacs Disease or just having a gluten sensitivity in general. I remembered that the previous week I had one of the most awful nights I've ever had. We had pasta that night. I actually had to cancel a drs. appt. the following day as I was too exhausted to drive there.

    I began to document what I was eating and if or how it affected me. I began to notice a definite correlation between eating pasta, breads, cereals and pizza and the nights that the itching and diarehha were very bad.

    I asked myself how the foods I have been eating all my life could all of a sudden make me ill.

    Dr. Google says that it's not unusual for this happen as we get older. It is related to ones immune system.

    After I was diagnosed w/PBS and started on urso I was still having itching so I went back to my pasta. I was without a doubt more miserable that night than ever..

    Now, I'm afraid of gluten. Just the word terrifies me....

  • I do occasionally have pasta (pizza a different matter, don't go in for all the fat content, not much of a cheese fan either). I somehow think that this PBC is difficult to work out.

    I find that odd days when I think I've not eaten as well even though that is probably an exaggeration, I've found the itching has not been as bad. I think part of it is the balance between what we eat and what is utilised with the urso. After all it has to be remembered that bile does break down food but at the same time it actually is for breaking up of fats.

    Can I ask if you have had a test for coeliac sprue at all? I did via blood check.

  • I will have the test for coeliac in 2 weeks when I have the tests to see how the urso is doing and also to check my iron level.

    I couldn't get my phlebotomy treatment today because my iron levels were too low. They said that I need to contact my dr. as they were at "transfusion level". In other words if I had been in the hospital for anything and my iron level was this low a blood transfusion would be in order.

    I have been incredibly tired for the past few days, more so than usual but my itching has been more tolerable. Obviously having a low iron count is responsible for the additional fatique but I wonder if it also the reason that my itching has been better....

  • Interesting you state that your itch seems better and you hav low iron count and feel so. I once did read a repsonder on here (last year sometime) that on iron tablets their itch seemed to be that bit better.....so again there seems to be so much confliction with how we all are.

  • Thank you. I will try that.

  • I have both PCB & fibromyalgia. Fatigue & lethargy are common in both. Low fat diet no alcohol no big portion meals help lot & exercise (gentle) when you can. Build in lots of rest breaks. Unfotuately ive had to cut my hours & completely change my lifestyle listen to your body you'll learn the triggers. X

  • I was fortunate that at some point the year following my daignose (2010) the fatigue seemed to vanish for me. So far I've not felt fatigued since though I do itch. I am energetic and on the go most of the day as I find that simply sitting about for just half an hr can start making me feel prickly.

    For me though I wouldn't say I have rest breaks but thinking about it, half hour reading a book over lunch for instance would probably be counted, I know unless I felt really really tired I couldn't crash out during the day. I have found by doing this previously I then find it difficult to go to sleep at night and that's to me a thumbs down if you tend to itch at night.

    The biggest change for me is the fact that I enjoy life even more now. I had only been remarried 9mths in 2010 when the itch started. I don't want to now feel I am not living life due to PBC. I never took life for granted over the years due to being widowed young and I think enjoying things you like (my husband and I do a lot of walking at the weekends and on any holidays we have) it can have a good effect on you as a whole and I am sure that helps somehow.

  • I run 3 miles 3 times a week and it is now starting to become hard work. I have a very demanding job and am a single mum, so I guess fatigue is to be expected. Has anyone else found that it is much worse just before a period? Sorry to be so direct.

  • My cycle very much affects it. And I am far more clumsy than I used to be just before totm too.

  • Relate to you there janey_babs, I've always felt clumsy just before my cycle. Now I am in the throes of going through the change I tend to somehow feel I know when I should have actually had a period (they are spacing out more and more this year to last) due to it!

    I was finding that the itch for me felt worse just before and on the cycle but now I haven't a clue. Don't know if that is a good thing or bad thing really.

  • That's what worries me most. I am struggling to adapt my life to deal with PBC. I fully expected to be able to control IT! No such luck.

  • Yes again that is the irritating part of this Pretty Bloody Crap thing as I call it, you try to figure out how to alleviate certain things, the itch in my case and it never seems to work like that. I've gone through a lot of drawing boards meanwhile, ha!

  • I have the same conditions. I eat low carb low sugar and get plenty of exercise which sounds counter intuitive but it changes the fatigue to genuine tiredness and means I get a better sleep. I also make sure I try and get long lies and naps at weekends. I find the fatigue inconsistent and worse when stressed. Not much they can do for it.x

  • I recognise that. I have a quick 'rush' after any sugar intake and then feel like I need to crawl into a hole and sleep. Will take that advice. Thanks

  • Hi there sorry to hear you struggling with the fatigue. Of all the symptoms fatigue for me was and is the most difficult to cope with. After being diagnosed 16 years and making work adjustments I had to retire on ill health. A decision I found very difficult to accept. I used to think back in the early days I could fight the fatigue but this made me feel even worse.

    So now happily retired I take care to pace myself esp if a busy family time is forecast and overall I cope ok. I do eat healthy and little alcohol and enjoy life......no point beating myself up about how life could have been better, I enjoy the simple things .

    Take care x

  • Hello again spoul.

    I was reluctant to quit my job when I was about to be diagnosed with PBC as I'd been a worker on and off over the years and even fit voluntary work into it all. I had been widowed young so left to raise 2 children alone (I had no mother to help) and had got by and can count myself proud my 2 children are doing well for themselves. I had remarried not long before I started to itch so quitting a job did make me feel different for awhile as I'd looked after myself for a long time.

    Fortunately it was my husband's idea to quit and 5yrs on from marriage today things are working out really well despite me having daignosed PBC for almost 4yrs.

    Unlike yourself I count myself fortunate really that the fatigue is no longer with me (I don't know what is worse the itch or fatigue, I do feel for some with both as I remember what that was like in the early days)

    and likewise I no longer think of the things that go through you head as in 'Why me?' or 'What if?', I simply get on with it. Sounds dreadful now but I'm finding I now forget how life was pre-PBC when I didn't itch! Maybe I am enjoying life so much these days as it is surprising how you see things so differently as you would if you were perfectly fine and healthy.

  • Thank you for your words of support. It is a difficult thing to come to terms with isn't it? I feel angry with myself for not coping with things that would never have phased me in the past. I hate to admit it, but I am also resentful at having to cut down on alcohol. The Chablis market has taken a recent nose dive!

  • I made a decision not to drink at all because of the two conditions. I want to reduce the chance of having to go back on the steroids. If I need to I want to be so sure it wasn't due to my lifestyle choices.

  • Yes it takes time to accept, I don't know how long you've been diagnosed but it took me at least five years to accept it. I was in denial and made myself very ill......carrying on with a demanding job as a full time midwife with unsociable hours and stress. I always tried to make myself look better in the hope people wouldn't know how ill I really was!

    Everyone's support really helps and I have a couple close friends with Pbc. We are all different but it helps to have a moan too

    Take care x

  • Thank you very much. Only diagnosed in April, but have been unwell for about 2 years. Partly grateful that I wasn't imagining it.... It doesn't help that I have a boss who said my tiredness was probably due to 'stress'!

  • Hello Hlj100.

    Back in 2010 I started itching early on that year and was working full-time in a managerial job at the time. I felt fatigued at the time but didn't think much of this due to the fact I was the temporary Acting Manager (small shop) and hadn't worked full-time in several years. Likewise I had never really had cause to be off work and hadn't frequented a GP after 1999 until the itch started. I was diagnosed with PBC Dec 2010 aged 46.

    After my first abnormal LFT early 2010 I started to take a bit of stock of things in the hope that it ws just a temporary thing and would go away when I was back on an even keel. I remember on the Manager's return from sick leave 5 months later and my husband and I going on holiday for 10 days, all I did for the first half was fall asleep a lot when not out and about which was something despite this itch that back then I did encounter part of the day too.

    I know a lot of people cannot just quit the job that they are in when they find out they have something that is not going to go away and have to deal with symptons of it daily but for me, I was in a position then to do so. It was my husband who decided it would be better quitting due to the fact I had taken up this job only 12mths previouisly and basically had left one good part-time job elsewhere that had steady working days to a job that worked variable hours and days of the week. I had only been married 9mths when I had started to itch and feel fatigued. I was fortunate that when I quit my job then I still had a Widows' Pension that I keep for life as I was a widowed mother from quite young.

    I know for myself the following year from diagnose and taking urso with improved LFTs the fatigue simply vanished. I am just left with the itch which is usually at night. If I have a borken nights sleep then I find the following day in the afternoon I do start to flag a bit and feel tired but not fatigued. I know the fatigue is different from feeling tired having experienced it.

    I did chop and change dietary but I had always thought I had eaten healthy prior to 2010 anyway so for me there's not much to change there. With PBC it is said to eat normally but give due care to what anyone without would do and diet low in fat and sugars.

    You state you have recently been diagnosed with PBC/AIH, once you are taking medication then you might just see some big improvement.

  • Thank you for sharing your experience. It really helps. I am a deputy Headteacher in a secondary school which is demanding, chaotic and busy and I love it. But by the time I get home to my children for job number 2 ie Mother, I have nothing left. I am really encouraged to hear that it may improve. Fingers crossed.

  • Hello Hlj100.

    Taking urso you should start over time to see a good improvement in yourself, I did.

    Given your job which I know can sometimes work outside the normal day (ie Parents Evenings, etc) you owe it to yourself to take a lot of time out when not working.

    I don't do any household cleaning that does not need doing over the weekend when my husband is home when I have time on my own during the week to sort everything out at my own pace. Time off in my house is for leisure. All these little things do give you a boost.

  • Eating alot of raw fruits and vegetables help a lot. Also need to have ur vitamin levels checked. I am very deficienct on vitamin D that makes exhaustion extremely worse. I've also had to slow down and take naps before work when I can . I was also prescribed colestpol for diarrhea and itch is gone! This med binds the bile so ur body can get rid of it because our bodies can't utilize it like we used to. Walking or swimming help me also as long as I don't over do it. I hope this helps

  • Hello nessiewolfe.

    This colestpol that you mention you are taking for diarrhoea (I've not suffered from this prior to PBC nor following whilst on urso), is this the same or similar to colestryamine? Or Questran as the brand name? These are normally tried for the itch you see so wondering if it is the very same.

    As you know as probably everyone is aware of now, I itch and it is confined normally to night these days. I've been very reluctant to visit the doctor and ask as to what I might try to rid myself of the itch and know that with certain medications given for the itch it can be hit and miss as to if it works or not. Anyone else out there who has or is taking this colestpol for whatever reason, had the itch and it vanished using it?

    Glad you enjoy swimming, I used to go regularly in my last-but-one job prior to starting with the itch and on the road to being told I had PBC Dec 2010. I found once I had the itch I simply found that swimming in the chlorine abundant water of the local swimming pool simply seemed to make me worse for awhile.

  • Peridot and nessiewolf,

    Questan and chloestramine are the same.

    I was put on chloestramine when the urso was not helping with the itch. After almost 3 weeks using it twice a day I have to say that it didn't help me.

    It also caused more side effects. The gas, bloating and constipation are not worth it. After experimenting with the dose and the times I take it I have finally stopped it altogether - today.

  • It does. Thanks. I will speak to my GP about supplements. That makes sense to me. My frustration is that no one can answer these questions as they do not know enough about it. I was diagnosed on April 2nd after being misdiagnosed with a range of complaints by in attentive GPs. I have not seen anyone since this date so no one has checked how the Urso is working etc. A bit scared really so this forum has definitely helped. Thank you

  • On the med part im not sure if they are related just that it works. I agree on the

    Chemicals in the pool luckily I live in an area that has a lot of ponds and lakes. Although I never swim alone to be safe. Oh and before I knew why I was itching I also used aveno oatmeal body wash I would put it in the bath water and as body wash

  • I am a board certified Naturopath. What I do is eat VERY healthy as I always did. I am a vegan. No animal products. Morning protein shake: You can use ready made powder or not + variation of fresh organic kale, blueberries, watercress, honey or carrots to sweeten. Dandelion leaves (greens are good for energy and inflammation). Vary fruits and dark greens. Add to Almond milk. I also like "Ashwandga" an Indian herb. All my meals have vegetables and lentils or chickpeas or organic GMO tofu. So far liver had "minimal" inflammation and no signs of PBC. Only my microchondrial antibodies are high. Have not begun the famous URSO yet. Getting second opinion today. Oh ~ If you can exercise is very important. Good luck!

  • I have PBC/AIH crossover. Fatigue is one of my most pronounced symptoms. I no longer work, I am a massage and bodywork therapist. I stay at home with my one and two year old daughters and manage our small hobby farm. I find myself overdoing it..I tend to be stubborn and don't like people taking care of me. I have had to learn how to ask for help and try to manage my time. When I do feel well enough or have energy i do things that have to be done; care for children and animals...after that it's not important and it may or may not get done. You have to put your health first. If you feel tired.rest.

  • Thank you. I know how rare it is to have both conditions. - I like to think it makes us special!!!!! Very little option for me to rest as I am a single mum with no financial support from the other parent. It is a huge, draining responsibility. Thank you so much for taking to time to reply.

  • How old are your children?

    There have been things I have done diet wise that have helped. Mostly clean eating, cutting back on dairy and eating fermented foods etc...

  • Not as young as yours, they are 13 and 9 so fairly independent. It is just the running around after them and the rugby, piano, netball etc.... I will try to cut out those food groups. Tailing a lot of re-training though... Haven't started my steroids yet and I am very worried about the side effects .

  • Having had PBC and Auto immune Hepatitus I can honestly say fatigue are symptoms. I am now post transplant ( transplant June 2013). There are certain foods I cannot have as they will affect my anti rejection drugs. The strange thing is some of the foods are classed as healthy. Grapefruit, Green tea, Earl Gray tea and a load of others. The body needs potassium , potassium is the main enemy of the liver. Foods that are high in potassium are bananas and mushrooms, fresh fruit can only be eaten in moderation. Good luck and I hope you recover well.

  • Thanks for the advice. Much appreciated

You may also like...