Tiredness

[swinstan]

I'm curious to know how others experience the tiredness from PBC. Does it feel like a physical exhaustion like aching muscles or just a need to sleep? Or is there a psychological tiredness too - like not wanting to be bothered? Or maybe a combination or even all three! It seems to me that it might be hard to distinguish from depression in some ways.

[Ktltel]

Swinstan,

Mine is a loss of energy. An "I'm done" feeling. You mentioned aching muscles. For years I've complained to 2 different doctors how mostly at night, my muscles in my legs and arms feel like someone is twisting or stretching them. Not like a Charlie horse. Just annoying ache. They never figured it out. It's Soooo much worse now. It happens during the day. I feel weak and walk like I'm 80 and I'm 57. I've had a bone density scan and all is fine. But, I feel like I have no muscles. I need help getting up off low furniture. What's that about???

Stella

[jane1964]

Hello I find the fatigue really bad,it was the symptom which made me go to the doctor before I was diagnosed.I found reading this article really helped me as it expressed how I find living with pbc fatigue.I hope it helps you too.Jane

bmj.com/content/345/bmj.e7004

[Ktltel in reply to jane1964]

Thank you Jane.

Stella

[Chocolate11 in reply to jane1964]

Same with me I felt like that for ages since 2010. When there were traces of pbc. Which made me feel sluggish and abit slow at work.

[Hidden]

Hello swinstan.

I can remember back in 2010 when I started to itch. I never thought much about as I called it 'being tired and exhausted' (was working full-time in a managerial job at the time) until the doctor said it was fatigue due to a liver issue (it wasn't known at the time I had PBC).

I called it 'waves' as I would be fine and then all of a sudden this wave seemed to come over me and I just felt like flopping down. I didn't have any issue with aching muscles/bones, it was a case of I just felt like I was being taken down. I often found I'd to shove myself to move. I felt OK first thing in morning even when I was itching practically 24 hours per day in 2010 (I often found then that a lot of nights I just was so tired with working I slept anyway, even flopping down when I got in from work and then not even having an evening meal as I'd nod off).

Since taking urso December 2010 and making lifestyle changes and knowing I'd PBC I lost the fatigue during 2011 but I do get tired some afternoons due to broken sleep due to itching late at night (starts around 11p.m and ends around 6a.m).

I think it could be easily stated that anyone with on-going issues in their life can start to feel depressed. I know I've always managed to keep hold of the edge of the ledge over the years and still seem to keep on going but I did read on my GP medical records online notso long ago that when I went in for the bloods January, unbeknown to me I was checked for derpession! Not happy about that as it is understandable a lot of people will get depressed but I would like to have been informed I was being checked.

[emerich]

Hi swinstan

I would say mine is a combination of the 3.Usually about midday. I can be in the middle of doing something and all of a sudden I'm exhausted. Wouldn't say aching muscles though, more tired. If I have a sleep for half an hour it usually helps.

[swinstan]

Thanks for all the replies. Does anyone actually wake up feeling tired and unfocused? And does anyone experience apathy more then lethargy? I just feel like I can't be bothered to do things anymore. It's not depression, I'm sure of that.

[jane1964 in reply to swinstan]

Hello yes I have days like that when I just can't seem to get going somehow and do pretty much nothing.I used to feel bad about this, but have now decided that it's just the way my body is telling me to rest and not to feel bad about it as on other days I do get a bit more done although still a fraction of what I did before I was ill.I can't explain this but definitely feel like you describe.I don't fight it, as I have found that doesn't work I try to make the most of slightly better days, and to go for a walk however short everyday.It's probably still worth having a chat with your doctor to make sure nothing else is going on though.Jane

[Wilmahair in reply to swinstan]

Yes that is my hardest time of day. Hence i tend to wind up when everyone is winding down for bed.

[4pjx__ in reply to swinstan]

Yes! I wake up tired even with a good nights sleep. I don't seem to have any ambition. I used to ride my horse 3 or 4 times a week. I haven't ridden her in 3 months. If I have something that must be done I really have to push myself to do it. I always feel better after I have done it though. So maybe I need to just keep pushing. 😑

-Pam

[Hidden]

I've had fatigue for the last couple of years, it's that kind of 'hit a brick wall' like every bit of energy has drained away it happens all of a sudden too rather like iam moving around with heavy weights on my limbs. Iam fine in the mornings it comes on in the afternoon and evening.

I feel lethargic like i need to lay down, but it's not a sleepiness nor is it relieved by sleep. If I sit and do something more sedate i normally get through it without feeling unwell.

If I push myself then I can begin to feel a bit disorientated by the end of the day and ready for bed by 8pm.

I get the I can't be bothered feeling but that's normally more to do with negative feelings of what's the point... thankfully I can normally get out of it.

[annieco]

Phew, I'm so glad it's not just me that feels like this, most days now. From being an active full time enforcement officer with a social life, a bouncy dog and a full life, to an exhausted, airless, unemployed and very frustrated 50 year old wondering what the future holds, in three years. My lovely little rescue dog had to go back to the sanctuary (I am heartbroken) as I could no longer walk him twice a day in the fields behind my home. I can no longer work, although I rack my brains trying to think of a job I could do - I can't predict the better days where I could work - to no avail. Believe me, I am a glass half full person, my motto is 'theres always somebody worse off than myself', but I am struggling, feeling so utterly exhausted day after day. Im going to have to move nearer my daughter, sell my beloved 100 year old home in a quiet village, which is causing me some distress. After working for 30 years I have to claim benefits, which don't even cover my mortgage. My life has turned upside down, and I wish there was something that will give me my energy back? I've tried vitamins, smoothies and cutting out certain foods, but nothing seems to help. I'm intolerant to Urso, and have my 1st appointment at Leeds Liver unit in a month. Has anybody got any ideas out there - a magic cure to the aching body, disturbed sleep, major brain fog and complete exhaustion? x

[mylo2]

Mine is like wading through treacle,everything aches especially my legs, slow elderly walk, although I am 73 yrs, shouldnt really be feeling this yet, but PBC does this , Used to dart about from one place to another, so it now gets me down mentally and physically, but really its about pacing yourself. DX 12 yrs ago, but thinking back I had started to feel the symptoms some yrs before that. . I really feel for young people who are now being DX with PBC, at least at my age it doesnt seem so bad, as feel Ive had a symptom free youth and middle age, had five children , DX first with underactive thyroid, which is kept managable with thyroxin, these auto immune complaints usually come hand in hand. . When Im tired ,Im fortunate enough now just to take myself off to bed, Folks are now used to me just disappearing and the reason why!!, Good luck and take it as easy as you can, X

[swinstan]

Thank you all so much for your replies. They have all been very helpful to read. I retired 18 months ago and although I've had positive AMAs since 2003 - no symptoms. Almost immediately, blood tests changed and some of the symptoms evolved. Rather than the active retirement I have planned for not only do I not have the energy to fulfil my longed for plans, even the will is also somewhat lacking. The family are finding this change quite strange too. But enough of the moans, I really am an optimist and your stories are helping me stay that way. I think I need to prioritise things and accept that 10 hrs sleep is now the norm! And of course be very thankful that my problems are not worse.

[Wilmahair]

For me its all you describe plus a brain fog. If i try to do stuff feeling that way i make mistakes. Like running off the road while driving or making craft mistakes on what ever i am working on.

My muscles also cramp after a day of just average activity and my arms and legs feel like lead.

Just plain physical exhaustion.

I dont feel depressed. I know how that feels and look forward to most days. I just know when i am suffering from fatigue i slow down and soon i will feel well enough again to go on. Sometimes when i have to continue through the fatigue i can get overwhelmed and end up in tears. I try very hard not to get to that state. More so lately if i sit down through the day i am falling asleep even after a good night sleep. Some days its just one nanna nap after another. Then i sleep all night again. Mind you on average my sleep is not terribly good as i roll from side to side to get off my sore parts. Which is a major factor when speaking about fatigue

No fatigue for me is not just depression.

[Mg40]

After sleeping for good seven to eight hours I am still so sleepy and tired and remain sleepy for quite some time in the morning. It's like my eyes are full of sleep and body feels so tired.

[Chocolate11 in reply to Mg40]

That sounds familiar to me also when I am at work.

[kandiepat]

Hi Swinstan, yes I lay in bed thinking about the day ahead, I don't want to shower, or get dressed but I do, then I don't want to eat breakfast but I do, if I go out I just want to get home and so it goes on. I wonder if I'm depressed but I can't be bothered to do anything that involves exercise or extra work like entertaining. Yet I don't want to die either!

[Pamela4475 in reply to kandiepat]

Kandiepat.... you are describing me too.... I don't feel depressed at all so must be disease.... I do activities and rest activities and rest.... so goes my day

[mylo2]

Know what you mean Kandiepat, most times I cant be bothered to shower and get dressed, I do of course but crawling back into bed is more inviting. You would think that there would be something we could take to help us feel better, . Although i HAVE A GREAT pbc NURSE, ,not sure they look on this site or even know it exists,so that they can get a feel of how it affects us all. Keep yer chin up, Mylo

[Eternallyoptimistic]

Hi For me it can be a combination of all three. When I was first diagnosed I was constantly getting extremely exhausted. I could fall asleep without even noticing only realising I'd gone after I woke up 2 hours later. I was starting to suspect having something like narcolepsy. My legs would also ache and I'd often feel they were just too heavy.

I took part in a clinical study of a drug called Ritoximub (currently only recommended for rheumatoid arthritis) which it was hoped would help with fatigue associated with PBC. I don't know if I got the placebo or the actual drug but I certainly felt much better for about 2 year. I think the results of the study should be complete by mid this year. I'm really hoping that it was what made the difference to my symptoms and that it is proven to help everyone in the study then it should be able to be used as a PBC fatigue treatment in the not too distant future.

During the trial a specialist explained that raised ama can make your body think it has been exercising and give muscles 'acid burn' therefore giving you aches and pains.

i know what you mean about confusing how you feel with depression. I do think I get quite low simply because I hate the restrictions the fatigue causes me e.g. So tired not got the same level of patience with small grandchildren. I also get a bit of brain fog/forgetfulness with my PBC and end up berating myself which is never good for the mood.

Hope sharing my experience has helped. X

[mylo2]

very interesting Eternallyoptimistic, ,will defo give it a mention to my specialist, would try anything to help conquer the fatigue, Thankyou Mylo.

[swinstan]

Thanks again everyone. Like some of you I do find waking up particularly difficult. Hadn't thought about that being due to brain fog rather than just tiredness. There doesn't seem to be much research into alleviating either one of these symptoms which to me seems strange. For many of us (hopefully) the PBC will take time to progress to final stages but what we all seem to need is some remedies to manage these debilitating symptoms.