So tired some days that I don't feel like I can hold it together

[NotorDJP]

I haven't been officially diagnosed with PBC yet, but I have something autoimmune going on, either PBC or something else. I live in an area that has had a bad winter this year and my hands and feet are always cold, and I'm cold a lot of the time. I used to be able to stay up late a night and still go into work and make it. But now I find if I stay up much past 10 pm I can hardly get out of bed in the morning. I'm so tired today that I can hardly face the day head of me and I still have another 8 hours to go. I don't know how much of this is disease or just not wanting to be at work. On Saturday, I woke up the same time I always do during the week, but I felt good all day, went places, etc. I still had to be in bed by 10, but I had enough energy to keep going all day. I know this is a part of PBC, but is kind of bumming me out. I'm only 44 and I have a higher stress job in the banking world. I know my employees think I'm a wimp when I just can't get to work on time some mornings. I have a staff of people all younger than me, save one, and the one older than me seems to have way more energy. I've never been a high energy person, but this is crazy.

I don't want to live like this the rest of my life. Does this get any better on the medicine? I know down deep I am worried about stuff that is going to happen, liver biopsy, diagnosis, if I have something worse even than PBC. I'm sure that's part of it. If find myself scanning my schedule a week in advance to see if there is a day I could leave half a day early or take off if I felt too bad.

[Alley27]

Hi sorry you feel so unwell. There is a lot of information on this site and I have found it very helpful over the last two years. Everyone is so helpful and what's more important is they speak from experience.

I was diagnosed in March 2012. I have an overlap of PBC and AIH and believe me when I say I know where you are coming from when you say you are so tired you don't think you can face the day. You asked if the tiredness improves with medication: I can only answer from my own experience and I have to be honest; I have had trouble with fatigue from the beginning and even now, but we are not all the same and PBC affects us all differently, but fatigue is a common symptom of both PBC and AIH.

Liver biopsy is uncomfortable, but bearable and essential for a diagnosis. You say you have cold hands and feet and cannot tolerate the cold. I also have hashimotos disease, which is autoimmune thyroid disease....cold hands and feet are symptoms of thyroid trouble as well...I wonder if you had tests done to check your thyroid; it might be worth getting it done if not.

I wish you well, and say check the posts on this site there is lots of info on here, check even if to have a moan, we are all in the same boat so we are not alone.

xxconniefused

[janey_babs]

Hiya, I have PBC and AIH. On the whole treatment has helped quite a bit with my fatigue but I do still have bouts when it is bad. I find winter a struggle but now the mornings are lighter it is starting to help.When I was first diagnosed I found exercise helped and it is now part of my routine. If you are diagnosed with pbc I would recommend joining the pbc foundation. They can give you so much info and also run self management workshops. As for cold hands and feet. This is something that has been getting progressively worse for me. It is under investigation and I am waiting on my referral appointment. There can be a number of causes. Sheepskin boots and mittens help. Keep your ankles ans wrists warm also helps. I have also taken to sleeping with my slipper boots on. Try not to stress it will make it worse.

[Hidden]

Hello NotorDJP.

Sorry to read that you are going through a very bad time at present with feeling the lack of energy.

As you've not yet been diagnosed with PBC it has to be noted that normally all liver conditions can induce fatigue (as well as itching) so whichever you may have that is more than likely why you are feeling so fatigued at the moment. Not to mention the additional stress and strain of not knowing what you may or may not have.

For me I was fatigued back in 2010 and it was the itching that took me off to see the GP. Although my LFTs were flagged as abnormal on a blood check you can also have abnormal LFTs with anything bone related too. So my GP had to do another blood test to deduce which area was of problem and it was the liver.

After diagnosis Dec 2010 I started on urso and I'd say by the end of 2011 I was not feeling fatigued any longer but the itch remains (I have it at night). I found in the early days of PBC (diagnosed just over 3yrs now) if I had a rather good day where I felt energetic, I did seem to really flag the following day. Yours sound to be like this.

Now if you do have PBC you will be prescribed urso and there is no guarantee that fatigue will alter just like the itching as it is all down to having a problem in the liver area. But I think as LFTs improve the system is better able to cope and for some of us we do start to feel more normal again.

I go round many a day feeling tired but it is different from how I felt back in 2010 - drained. My tiredness now is due to lack of sleep some nights due to itching. Then I start feeling like I could just go to bed around teatime but pick myself up and keep going.

The problem with PBC is that it is what I say an invisible condition to have. It's all going on inside and no-one really sees the effects of it. I go about appearing to be 100% healthy but if anyone was to spend time with me for a 24hr period they'd see it differently. I fidget from about 9p.m. at night, a time when I would like to do what I used to do pre-PBC, relax and watch a film without fidgeting about due to feeling the prickles (the start at night) of the itch which then had me getting up at intervals and moving about for a few minutes to relieve myself and then sitting back down again.

Family members do not understand PBC. My brother did say to me notso long ago when I said I felt really tired one night (have been visiting hospital a lot in evening as my sister is in for some time, she had a ruptured aneurysm Nov) and he just remarked, "We all get tired" and when I said it was due to having this PBC he still didn't understand. Tiredness comes in various forms but certain conditions can tired someone much more than the normal person.

I think the sooner you manage to find out exactly what you may have, the sooner you can deal with it and it may make you feel a lot different as you can start then to deal with it.

Please keep us informed.

[AngelaGM]

Hi, I have a few autoimmune diseases - one being PBC. I have found that being stressed can knock the stuffing out of you and make you severely fatigued. I have recently been diagnosed with Fibromyalgia and have just finished a 6 week course within a group of people aged between 29-70 which was based in the Hospital and one of the main symptoms of this disease - with most people - is severe fatigue. All of us in a group of 12 agreed that stress played a major roll in our condition. I personally try to keep away from certain people, situations that make me stressed and I do feel better when I do this. Please try not to worry or get stressed I honestly think it helps the fatigue. Good luck x

[ZiggyBean]

Hi,

You don't live in NC do you?

I have PBC/AIH overlap. The exhaustion is the worst. I am a stay at home mom, I left the banking industry to have kids.

I have two under two and struggle to care for them. I found that when I cut out dairy and meat and started eating whole foods my energy was a little better and was more consistent. I also take sublingual b complex vitamins. Hope that helps

[SC49]

Hi NotorDJP

I am sorry that you have had such a rough time. First stop worrying about 'something else' - PBC can give you enough to contend with. When the docs tell you its time to worry, that's the time to start. You may never need a biopsy or anything else.

Please don't take what I am saying as a slight but you might have to go through the process of ruling out things like depression or anxiety first. It can be a shock to the system to get diagnosed with PBC especially if you have bad symptoms. Even though I was pretty certain that my mental health was ok, the docs did put me through counselling and CBT before they eventually concluded that tiredness and fuzzy brain might be something that I just have to live with. Personally I didn't get anything useful from it but I think that CBT and counselling are both brilliant ways of getting support and I have seen many many people who have done them and felt a million times better. I think its horses for course and those particular courses were just not for me.

The tiredness hit me like a brick about 2 years ago and it was another 9 months before I was diagnosed. I worked in a challenging job. Between tiredness and problems with my memory, concentration and ability to process information, I became a bit of a liability so I had to go off on long term sick. I haven't had any relief from the tiredness or the fuzzy brain. I can sometimes get through half a day but that's about it.

My LFTs have started to return to within a normal range but I can't say that I have felt any improvement in my ability to do anything.

Now I know that this sounds negative but I think that a lot of 'managing' all the symptoms is about getting it straight in your head. Once the professionals agreed that this was 'normal' for some PBC patients and not something that I was doing wrong, i found it easier to manage it.

I think until the professionals tell you it's your ' new normal', you're always looking for 'the cure'. Once you stop looking for 'the cure', you can relax a bit and start working on how you will fit it into your life.

I haven't gone back to work yet - I am still kinda upset about that because I love my job. However, I am able to organise the rest of my life so that I can do at least some of the things that I like. I know now that I am not depressed and that there is nothing wrong with my coping skills - which is what the docs thought when I first talked about the tiredness.

At the same time, there are things that you can do to keep yourself as healthy as possible - eat right, exercise if you can, avoid the things that you know are bad for you, enjoy the things you love as much as you can, accept as much help as you are offered - whether its someone cleaning for you or the doc offering counselling - ANY help will lift a wee burden.

If you need to step back from work to be able to do other things, then it's something you should think about. If you have to abandon the housework, then remember that noone on their death bed ever said 'I wish I had spent more time cleaning my house'

But don't make any decisions when you are feeling low. Get a breath of fresh air, decide what the important things for you are and then see if you can find ways of making them work.

You will be able to find something that works for you - and remember that any decision is only a temporary thing. Whatever you decide, you can change your mind.

Good luck x

[NotorDJP]

Thanks everyone for your kind words. I think depression is playing into my feelings and anxiety too. I have anxiety issues anyway, so I'm sure that is part of it. Last evening after I posted that, my energy got stronger as the day passed I felt better last night than I have in ages and I feel good today too. I think you're right about getting your"mind right" My mother had a great attitude and knew when her body was saying, STOP. I don't think I'm in the place to step back from work. I get a great deal of satisfaction from work and it would be very difficult for me both emotionally and financially. Luckily I had disability coverage through work. Work has been slow (I have lots of sales goals) and I think that bothers me too.

I agree too not to worry about what if. I'm horrible at that, always have been. But I've actually been better about it overall. I was just so tired yesterday morning that I felt like I couldn't put one foot in front of another. I'm doing better eating too, so I'm sure that will help. Thanks for all your support. My mom was the person I hashed these things out with and now that she is gone, I feel like I don't have many people to talk to.

To the person who asked where I am, I'm in Indiana.

[alohas]

Aloha! I read your story. I'm experiencing how we all will have some what something wrong in our health and try anything to stay healthy easier said then done, a prayer that god created us and blessings that all our organs team work together will happen to you, as well for work, familys and friends, I have been juicing veggies, fruits for 2 yrs, studied the most healing veggies like kale, collard greens most nutrious on the planet and soo much more, defining all healing meds actually come from these plants God created on our planet etc...seeds, skins, stems highly recommended to juice except apple, apricots, peaches,plum and cheries.seeds.so truly do it, it's not expensive n you can do what I did. If you can watch or get benefits on tv add of Nutribullet you'll be happy I shared this with you, oh yeees I promise....just keep the faith n rarely of doctor visits you will be in control, huggs and GodBless your strength back n no giving up.....lots of water.....IMUA!! in hawaii means like president Obama says (move forward) you will be all better, ... .Deriahjo Freitas ......

[squeak67]

I feel for you. I have been battling severe fatigue and find it hard to get up and do anything. I was on my couch for a month and just started going back to work. I have had a really tough time dealing with this. My muscles constantly feel like I have just run a full marathon with no relief. I have started to try to manage my fatigue by planning out my week and where I need to conserve my energy. I find if I have an active day the next day I am wiped out.

I would love for any ideas on how to combat this also.