Very tired.

[Vera70]

Does anyone who is in early stages of PBC feel tired all the time? I have to take a nap every day and go to bed early. I was diagnosed early this year and starting last fall (a year ago) I have required lots of sleep. I take Ursodiol and it lowered my liver enzymes so it seems to be working. My biopsy showed only inflammation and that was before starting urso. No fibrosis.. my doctor thought I should be feeling better now that my enzymes are in normal range. I don't think he really understands PBC even though he is a hepatologist.

[Ktltel]

Hi Vera70,

Fatigue apparently is part of the PBC disease. Some have it worse than others. You might have your thyroid checked and see someone who can check adrenal gland levels. I'm early stage also and slight fatigue is something I experience too. I do too much one day, and I do nothing the next. I'm still learning how to balance that better.

But, there are other reasons you can be fatigued too. Rule out those and then you'll know if PBC is the real reason. Google, What causes fatigue? It can be vitamin deficiency, my potassium was 2.5 at one point. I had to have a potassium infusion. Man did I feel better. It could be many things. Hope you get some answers soon.

Take care,

Stella ❤

[Vera70 in reply to Ktltel]

What stage are you?

[Ktltel in reply to Vera70]

Hi Vera70,

I'm early stage one as of Feb. 2017. Haven't had a fibroscan but had a biopsy back then. It showed mild fatty liver.

Stella

[gwillistexas]

Hi Vera70. Yes, seems being tired at some point during the day is what we do, lol! For some reason it didn’t hit me today, but most days I dream of a nap around 2:00.

[Vera70 in reply to gwillistexas]

What stage are you?

[gwillistexas in reply to Vera70]

My GI did a fibroscan about 3 weeks ago. He said mild to moderate fibrosis, F2. Nurse says low end F2.

[gwillistexas in reply to Vera70]

You are very fortunate if you have no scarring. That’s great 😊

[Heleno]

Yep, been tired for years, way before I got diagnosed. Weird thing is when consultant was trying to figure out what was wrong he used to ask if I had itching but never asked about fatigue.

I have been going through a period of feeling really exhausted (worse than just general tiredness I had been feeling) for about 6 months now, waking up exhausted, wanting to sleep in the afternoon and generally just feeling rubbish, which isn't good when I have a full time job to do! I actually think I've got worse since starting taking the urso but my LFTs are back in normal range. The drugs don't improve the symptoms I'm afraid.

[Hidden]

Fatigue has been my companion for about two years now, I was dx 8 years ago by chance. My consultant is convinced it's not from the pbc and ordered a host of other tests, that were all clear. However it's best to check things out just in case.

I did read that the severity of pbc symptoms do not always correlate with disease stage, that's why I believe my fatigue is due to pbc.

However, what I find interesting is lots of people say they need to sleep, and do sleep. However for me my fatigue does not make me feel at all sleepy, it's more a physical exhaustion like there's no energy left in my body to carry me through the day. More of a case of if I don't sit down I would fall down.

[GayleShepherd]

Hi Vera 70

I'm early Stage 1 and was diagnosed in March and have been taking URSO since May and I'm still tired all the time. I get very fatigued when I do everyday things like hanging the washing and changing the bed linen and have to rest halfway through. Very frustrating. I'm just about to get results of my latest bloods. The only difference is I don't have itching as much now.

[Gbar]

I was at that point about 10 years ago! After taking the urso the tiredness definitely lessened. Good result I thought. Still working nearly full time . Occasionally a lunchtime nap is helpful..

Early bed is fairly normal for me.

[Hastingsgal]

I've only been told I have pre-PBC whatever that means. I have terrible fatigue & prurits plus Sicca. I had a bought of severe chronic fatigue which lasted 4-5 months in which some days could barely move. I'm normally super energetic & fit. One day of exertion like cycling would mean 3 days mostly at home resting & in bed. We are still trying to figure it all out as they think I may have other autoimmune diseases contributing such as Sjögren's. My LFTS are fine. Fibroscan fine. AMA positive. Liver scan next. The itching & fatigue are so debilitating. Oh and my severe dry eyes! Not fun guys & gals!!

[Lynne5001]

Extreme fatigue is my experience as well. It is part of PBC in about 80% of patients, from what I've read. I use a CPAP at night and am still so exhausted that I fall asleep while working and have "brain fog" where I can't remember what I'm doing. The fatigue does not correspond to the degree of liver damage and can go away when the liver gets worse. Make sure there's no other cause for your fatigue. Try to exercise even if you don't feel like it. Exercise may help.

[Lilbear89]

Hi, yes I am exactly the same but being 27 I get looked down on if I say I need to have a nap.

I was diagnosed last July nit told what stage but my last bloods showed that all my levels were pretty much back to normal and my consultant here in South Wales (UK) said I should be feeling better too. I am also still really itching and some days/nights I feel like my skin is on fire and nothing is helping. I was sent to Birmingham queen Elizabeth hospital to see a specialist in PBC and he is trying to get me on a clinical trial for a new anti itching drug. So fingers crossed.

Take care and keep us updated xxxii

[hamadruas]

I was diagnosed with PBC about 2 years ago, and like you have no damage to the liver at present (next check up on Monday so fingers crossed thats still true!).

I do still get tiredness, but can second the thing about getting Vitamins checked.. it was much much worse for me a few months ago. I was found to have low folic acid and vitamin D. Supplementing them for a while made a huge difference, and starting to walk regularly too. It was hard to start with, but little by little I've built up to be able to manage several miles now (maybe once a week), where previously 500 yds would leave me exhausted.

Getting outside has likely helped with the Vitamin D too. I understand that PBC can cause lactic acid build up in the muscles which obviously means its easy to just stop doing much exercise, but it seems to be really important to put up with the initial discomfort and keep with it.

I've also put myself on a low inflammation diet, which has transformed my life. (I also have HMS and a huge number of food intolerances, including Salicylates, so it may be that is the most affected)

One other suggestion.. make sure you drink plenty of water. The liver needs it to work as efficiently as possible, and it can affect so many parts of the body if you are de-hydrated.. which a large proportion of the populus is.

I wouldnt have believed it until I saw for myself. Walking, Diet and Water (and meditation), and I usually last all day without a nap and bedtime at 11pm.. a year ago I was done in by 2pm and no amount of dozing would get me back lively for the evening.

Of course, its different for everyone, but I hope you find some thing that helps, and find ways of making the most out of the times you have energy

[SuziRae in reply to hamadruas]

I did exactly the same. PBC is an auto-immune condition so it's important to check everything. My immune system is attacking my organs. Open heart for metal aortic valev and now another is scarring. Thyroid is under active for which I take pills. I was told advanced scarring in 2014 but since I changed my lifestyle, there has been no change. Blood is good. No fatty liver. I know it's because of vitamins and minerals and lots of walking. Here in Ontario, doctors still do not respect the impact of vitamins and minerals on health. I had to fight for vitamin D test (it's expensive). Result was low so I increased from the 3000 to 4000. My diet has also been overhauled. Organic veg, meet and dairy. I eat everything. I stopped drinking for a year because they said so then as I learned more I realized the rules are the same so I went back to enjoying 2 cans of ice cold Coors Light a day. I am gobsmacked that governments do not demand simple nutrition tests. Imagine the health care dollars saved if they were more proactive.

[SuziRae]

meat...not meet...lol

[SimbaTutor]

I was diagnosed May 2014 after biopsy confirmed PBC. End stage 1 to beginning stage 2 as I had inflammation, granulomas, and very mild fibrosis seen on biopsy. Fatigue is still my greatest challenge. Urso since diagnosis. I am self-employed and teach special ed students. I set my schedule for 5 hours teaching, rest for an hour, then 3-4 hours evening tutoring. When I behave myself, I can manage this schedule. I can lessen the fatigue with increased water intake, minimal sugar, and eating healthy meals. Another factor I found was minimizing chemical load by using as many natural products as possible (i.e. goat's milk soap and minerals in makeup). When I overdo, I am useless the next day. I have had to learn to let things go instead of stressing about what I can't do as well as learn I must take care of me before I can help my students. Hard lessons and still difficult 3 years down the road. I encourage you to find what works for you. Blessings and grace to you as you walk this difficult road.

[Oscardog]

Rather old thread but in case yiu read it...I never really got tired with PBC and had it for over 20 years but it has now gone to full blown cirrhosis And yes I feel exhausted sometimes ..just seems to suddenly happen....waves of fatigue and then can be ok again if I rest for a while, hope things are better for you.