With all due respect for everybody. I have experienced from my mother and also read quite a few things on this subject:
Liver patients generally are said, to some yet unknown extent (or depending on the individual context) to be more prone to a certain degree of irascibility, generally speaking, substantially more than what they used to display before the liver condition, particularly PBC, started.
This is supposed to be directly related to the biochemical changes in the body of liver/ PBC patients - toxins not properly flushed away, excessive or too low levels or various chemicals in the blood etc.
Does anybody have similar experiences or knowledge? Have you discussed this with your doctor and/or your families, has any change of that kind been observed in you?
Thank you for sharing.
Written by
Cristina_Romania
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17 Replies
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Hello Cristina. YES I can definitely say that since I started itching early 2010 and feeling fatigued (was working full-time at around 45hrs per wk at the time) I have been more irritable.
I put it down to the fact that at certain times in the day, usually evening when I feel fidgety and then tired (I normally rise at 6a.m. when my husband is due to set off for work Monday to Friday and I work Saturday morning), irritability is a bit rife due to wondering when and if the itching will appear (sometimes I am lucky and miss out!). My best time is during the day for me to carry out any duties or household chores, baking and even letter-writing (have several penfriends).
I've always been a person who has patience and still has but I have noticed whereas in the past I could feel the normal tiredeness of an evening but continue whatever I might do of an occasion (more active in summer with lighter evenings), these days I just find the fidgety feelings and maybe the itching just have the opposite effect as they take over.
I used to love going to the cinema for an evening film if there was a movie on I really wanted to watch but since diagnose of PBC Dec 2010 I just don't feel I could remain seated in a packed cinema to concentrate on a movie now.
I think tiredness makes you more irritable as you are less able to cope with regular things but I think that can apply to anyone and not just having PBC. Sometimes not sure if symptoms are attributable to the PBC or the AIH or getting older or the menopause or life in general. Difficult one to pin point. All very frustrating at times. Just have to take every day as it comes. x
i agree with jtxx with this. as a PBC and menopausal sufferer i know that i am very hard to live with now and dont have the patients that i use to have. and i know that its hard for the people around us all the time, so just hang in there and hope your mums keeping well.
you mean, am i crankier then i used to be? darn right -- with Everything i have wrong with me, with STILL, after 7 yrs after diagnosis, having to tell certain idiots in the family around me WHAT is wrong with me and NO I am NOT a drunk, yes, i'm cranky. - alot of the symptoms, thank goodness not 100% of my time is symptomatic, but enuf.to make me cranky. its just me and my husband in this big stupid house (too big for 2 people) and i've Earned the right to be cranky -- Thank You for asking. - :)))
Thank you all for your answers... Being affected by all the annoying symptoms is very much understandable. I ment though if any of you has had a talk with your doctor about this and if he/she gave some biological, chemical arguments for this situation too. As I've been give for my mother, for example, re toxins in the body and bad processing of ammonia.
Yes i am more irritable, I find myself asking my husband is he stupid if he doesn't understand something, Also we started to restore the house before I got ill, since then the house has just gone from bad to worse, hubby is now trying to do it all himself and it's a huge house as well like delores, we have a six bedroom 3 story victorian house for just two of us, I just get so ratty with the tuupid house and him. Oh and all my so called friends don't talk to me now as this is all my own fault `don't you know` for drinking so much, so I get the bit about having to explain to stupid people and at the moment my skin is on fire as well.
Having visited my doctor yesterday, it seems that I may have had PBC since around 2005. This coincides with a diffcult period in my life (various stressful situations) where I became extremely irritable and snappy and became less and less able to cope with my teaching job which I subsequently gave up. Diagnosed as having depression at the time - long term antbiotic use for acne muddied the waters with regard to LFTs. Still get irritable but now recognise this a a sign of fatigue and try to stop what I'm doing for a rest. Pacing myself helps enormously but easy at the moment as I'm not working.
Really interested to hear that this may be directly related to the biochemical changes in the body of liver in PBC patients. Will be sure to ask my GP about this next time.
I am more irritable but I had put it down to the fatigue, having to look after 2 children and general feeling of being unable to cope with everything I have to do. Life is such a struggle with PBC!
I am very interested and thankful for all your answers. My thought was and still is - be it for chemical changes in the body, be it because of annoying and tiring symptoms and pains - if a problem is identified and one becomes conscious of (a certain tendency to be, generally speaking, more irritable and nervous - due to medical reasons of any kind) it *may be* a bit easier to confront and manage the problem.
At least I know for sure that if I had been more aware of these things, I (as a family member) would have certainly tried to be a liiiiitle bit more careful and patient with my mother and would have behaved maybe a bit different.
Thank you all.
Cristina -- i mentioned your query to my husband, his response was 'no, its just out of frustration' ------- honestly tho, i think they might only know if they autopsy one of our brains and see more or less of something -- (and our livers of course)
I feel irritable as well due to being frustrated not able to do everything I should be doing e.g housework etc.
It had been really hard work when my children were younger but you so don't want to say anything because people don't understand and think you should be able to manage because you look fine.
I had so called friends who spread rumours that I'm an old drunk. I have been careful now who I tell. Some friends change the subject if I speak about my illness (why I can't just go out and drink and be social because I'm tired).
I'm happy with my family and the friends who care thats all that matters. I try to ignore petty people.
The friends that are being nasty are not true friend so they are not worth bothering about. True friends and family are the ones that matter, I have been blessed, like you, with really understanding friends and family. I just find it frustrating that we have not got much control over what this condition is doing to our bodies but we just have to look after ourselves as best we can. I was never a big drinker but I do not drink at all now. I feel that the only thing I can control is what I put into my body and I don't want to put my liver under anymore stress than it needs and everyone just accepts that's the way it is. Anyway if anyone did have a problem with the fact that I do not drink then it's their problem, not mine. Take care.x
Well said Jtxx!
I haven't told friends about me being diagnosed with PBC except a few close ones. My family don't fully understand and carry on like they always have but I know they don't mean anything by it.
I get irritated because my family still drink like they did prior to my PBC diagnose so I find it off-putting now with social occasions. January was my niece's baby's christening which we attended, church only as my husband and I decided we'd forfeit the get-together in a social club afterwards where once of a day I'd have gone, not had very much to drink but not felt excluded. I found it easier to say no before PBC for some reason.
I had my 2yrs old grand-daughter a few days ago whilst her mum had an appointment to take her grandad to and the 4hrs of having a rowdy toddler around certainly whacked me out! I have to walk uphill home from town and found pushing a pram now certainly took it out of me more now I have PBC. Fortunately my daughter (she's an ex-veterinary nurse) does understand but I feel guilty that I can't do more but that is how it is. My sister as good as she is just doesn't get it full stop as most of us say, we all look so well!
Besides being in awe of so many strong people around here, I would like to ad that, from what I've read, the PBC Foundation has various information materilas for a) patients, b) medical staff, c) general public. There are 3 leaflets on their website. I have shown at least these leaflets to people (who don't have time to read more, or are not that interested in this, but who had various preconceptions) and there was more bit of light on what PBC is and how it affects people. Leaflets are easy to read, maybe sharing these with certain people (who speak without knowing) would help.
I think that irritability comes from so many areas Cristina.
As others have said, it often comes in spades with the fatigue, but I have aso experienced it or been told that it comes because of....
*Fear.. the fear of having an incurable illness, the fear of not knowing what will happen tomorrow or the day after.
*Frustration at health professionals. It can be distressing when we have to explain allt he time, esepcially if we are acutely ill and have to start trying to explain the basics of PBC to health professionals who are more interested in asking us how much alcohol we drink!
* Frustration at people implying we shouldnt feel like we do when we look so well
* I also get cross with people who seem insistent on making me drink alcohol... I have ever really drunk much... I just prefer to be sober.. it never used to both my friends... but since getting ill, they often say things like... one won't harm you. Surely you are allowed one... or something like that....
I agree its good to take leaflets around with you... especially if you are going to the clinic/ dentist/ gp etc...
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