I was diagnosed 3 weeks ago after a year or more of quite severe symptoms - particularly tiredness and real difficulties with my head (mostly inability to process information, inability to concentrate on anything for more than a short time and appalling memory). I have been off work since January.
I thought that being away from work that I would be able to manage the tiredness better but alas, no - i have been sleeping almost every day for around 3 hours. If I could I would sleep all day and every day.
When I got the diagnosis, I was kinda happy because it brought to an end the awful uncertainty of not knowing what I was dealing with. I was even happier when the consultant told me that the medication would work very quickly and that these symptoms would begin to subside within a few days. My heart wanted to believe him but my head was a bit sceptical.
Lo and behold, my head was right. If anything, the symptoms are getting worse in the sense that I have now added pain and more itchiness to the list of things to keep me entertained.
For the past few weeks, I have forcing myself to stay awake during the day. I have been taking wee short walks and trying to move about more. But it is a bit of a disaster. I can get to about 2pm - and then everything starts going down hill. My concentration levels - which are bad to start with - deteriorate. I get headaches. My eyes are burning with the effort of keeping them open. I feel my heart pumping in my chest and in my head. I get that awful shoulder pain, my bones are sore and my joints are creaking like a very very old woman's. Then by about 6 o clock, I am falling unconscious.
That's not a good time to be falling asleep - it's homework time for my son (13) who needs no encouragement to miss homework and it's eating time. Until I started taking the tablets, I was spinning the meal preparation out over the day - preparing things in the afternoon, having a sleep and then cooking when my son got home. Even with that routine, the family were having to put up with charred remains more than once a week. Now, it's a burnt offering nearly every evening. I cook at least 2 separate meals because of the vegetarian/ carnivore split in our house. Every night one of us is picking the burnt bits out.
I think I am coming to the conclusion that i am not going to find any relief from this!!! Has anyone any ideas???
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SC49
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There is a lot of comfort you can find, from authorised information sources (PBC Foundation) and other sufferers too. Tons of interesting info here, even more and peer reviewed by specialists in the PBCF Compendium about PBC. It is not a death sentence, not even close. Get properly informed and keep the hope up :). Everything you go through - others have done and are doing it too, and there is help available.
thank you Cristina - I've been reading the compendium and you are right - it is a fantastic resource. It has been giving me a lot of hope over the past week or so. This forum is brilliant too - I think between the forum and the compendium, I am probably more ready to pull the medics into line.
Hi, I'm sorry, but why do people keep using that term "It is not a death sentence" Not even close? To me PBC is differant with each person out there with it and some live longer than others but it is not curable and we will die from it if not with something eles.
So in a way it is a death sentance, some longer and some shorter.
Again, sorry but I had to comment on that phrase. Thanks....
I'm sorry, I need to explain here. I am in/from Romania, and here there are a few ideas that go around in the medical world, for example that life expectancy is 7-10 years from diagnosis. Which equals for most patients with a definitive sentence. Which is so NOT the case...
To put it differently, life itself is a fatal condition. I have met people with 20, 25 years from their diagnosis and still in a quite good shape, so I always do my best to take that horrendous idea out of patients' minds.
Your only 3 weeks down the line...I don't want to put a damper on it but, personally I think the consultant may have built your hopes up too much too soon. I know you've had a rough time even getting to the diagnosis but give it a few months for the medication (I presume URSO) to start taking effect and to get into your system properly. I know with certain medications they say it takes at least a month for your body to adjust to the drug and 3-6 months before you start feeling the benefit.
Who wouldn't hope for a quick fix so to speak ...but I'm sure deep down you knew/know thats really not going to happen.... well not as quickly as you hoped anyway...but you will get there eventually...so don't give up hope.
Try not to fight against the tiredness...I used to fight and became so ill I collapsed in work. My GP told me that I collapsed because it was my body telling me that enough was enough and shutting itself down. So the message is to listern to your body...if you are tired sleep and don't beat yourself up about it....I can sleep for anything from a 30 minute cat nap to 3 hours completely zonked out. You just learn to adapt...you mentioned you can last up until 2pm ..have you thought maybe if you cook your evening meal before 2pm, you could warm it up later. If you fall asleep after 2pm... then so what....no more burnt offerings...the dog/bin may not be happy but your family and your purse will be delighted. You'll be well rested and able to tackle any homework questions your 13 year old son can throw at you .....I too have a 13 year old son so I know exactly what you mean.
Unfortunately you will get periods like this every now and again...I call them my episodes and don't really know why it happens....I havent felt too great for the last 2 - 3 weeks with tiredness and pain. It sounds really stupid but I was so tired I couldn't sleep!!...I was in so much pain it kept me awake...I was snapping at everyone....felt totally miserable....it was a vicious circle...I eventually went to my GP last friday hoping for something to make me sleep...He changed my pain relief saying if we could get the pain back under control then it would hopefully help with the sleeping...The new pain killers are beginning to help a bit... I managed to get 4 hours undisturbed sleep last night so mustn't grumble. I don't know if maybe this time my body had got too used to my old pain relief and therefore they become ineffective...Half the time I think its a big guessing game with PBC and its hard to know for definite. I do know however that if I can keep my pain at a manageable level and can get a good nights sleep my whole demeanour changes, I feel much happier and can cope much better.
When I was first diagnosed with PBC (Jan 2011) my only symptom was joint pain. I had also been very tired but had put that down to possibly age ..I was 50. I did not know anything at all about PBC...then I read up on the symptoms ...by the end of it I had almost convinced myself I had every symptom documented...I didn't, but nevertheless I had planted the seed. The mind is a funny thing and can play tricks on you when you are vulnerable.. When I got my rational head back on I knew differently...yes I did have the pain, fatigue, indigestion and have recently added dry mouth and itching in the ears...but not anything that I don't think I'll be able to cope with.
Keep positive, learning to cope with this complex condition will get easier... WITH TIME!
I knew when the consultant was talking to me that he was not giving me good advice. I had anemia a few years ago and it took a couple of months to get back on my feet again after that. I should have listened to my instinct that PBC was going to be a bit harder to beat than anemia!
I was just talking to a longstanding friend of mine and she reminded me that I am not blessed with the gift of patience. In the olden days, I was able to just do what I wanted, when I wanted to. I could happily run myself into the ground and then be ready for action again the next day.
I guess that patience is something that I will have to learn. If I can crack the patience thing I am sure that the other stuff will eventually fall into place. What I lack in patience, I more than make up for in going with the flow and not fighting necessary change. I just have to rely on that part of me until the patience kicks in
Have they done checks for anaemia recently? Its just a thought but you never know you may be anaemic again... especially as you were so poorly last time. I have been anaemic on a few ocassions in the past and have been put on a course of iron...but not since I've been diagnosed with PBC. My GP has ordered blood tests on me earlier this week as a result of my recent extreme tiredness and pain...and because of my past history one of the tests is for anaemia .
I too have found it hard not being able to do what I want when I want ...its the total loss of control over your own body that I find most difficult... my body is ruling me not the other way around...its so frustrating....and as far as patience is concerned it doesn't exist in my vocabulary.
You are sounding more positive though I am glad to say... so keep it up and take care of yourself
Not only patience, but mind power too. Don't laugh, placebo is not a lie but the most powerful force in the organism, that can start or set back healing processes. So keep the faith too. And for God's sake, do mind your diet - not only "no fats, not excessive sugar etc etc" but also watch out for chemical stuff in your foiod, try to eat as natural as possible. Read about glutamate, MSG and other excitotoxins in the food and their effect on autoimmune conditions and the whole body.
Yeah - I agree that the mind is a very powerful organ. I just need to give my positive thinking a wee boost. I also agree about diet - it's something that I am fairly careful about anyway. As general rule, i'm vegetarian, i don't eat much processed food and I try to avoid the 'bad' stuff. My BIG dietary vice is chocolate and my other BIG vice is smoking. The smoking has to go!
I agree totally with what you say about the mind being a powerful force...positive thinking and all that.
I must dig out my compedium again. You refer to it frequently and always give good advise so I am obviously missing out on a lot of useful information that it holds. I was not in a very good place when my compedium arrived. I briefly scanned through it and put it in a draw....out of sight out of mind ....If I couldn't see it I wouldn't know anything about PBC and it would just go away. I was very frightened and just did not want to know. I have not picked the compedium up since.... Well I know what I'll be doing this weekend!!
Dark chocolate, with less sugar and more antioxidants from cocoa, is a healthy treat - in reasonable quantities. Though somebody said chocolate made their itch worse and when they cut the chocolate , itch improved. Worth knowing I think.
Don't quite smoking, no need for that. Among other things you're ingesting some of the most powerful neurotoxins known to man, which go to the already affected liver and make it even 'happier'. No, for sure, no need to stop it ;).
lol... I will read the bit that says 'no, for sure, no need to stop it' and just ignore everything else That's the kind of encouragement that a hardened smoker like me needs - any excuse at all
However, my poor liver wants to stop smoking, my lungs have had enough and my finances have had enough. It's time i think to take the big step.
I love dark chocolate and it is nice to know that it has some health benefits. I think it's easier to have reasonable quantities of the dark chocolate - probably because it has less sugar and other rubbish in it.
I am not sure what Cristina is syaing here. However, I would ask you, in the strongest possible terms, to consider stopping smoking. In *really* simple terms, smoking is not good for the body. We know this. Technically, once you stop smoking, the chemical addiction is dealt with in 3 days- 3 difficult days, I know, but 3 days none the less: the rest is a change of habit, a change of ritual, a change of mindset: nothing more.
Nicoteen isn't exactly great for the body. Neither are the other chemicals in cigarettes. Someone with PBC has a condition that affects the liver. Someone with PBC would be well placed to consider the chemicals/toxins they are asking their liver to deal with.
So, yes. As an organisation, we believe stopping smoking is a good thing for your health. It might not affect your PBC directly, but indirectly it will help enormously. (Also, smoking can be a factor if nearing liver transplantation.)
There is a wealth of information, of cessation assistance, of support available on the NHS.
Also, to reiterate what Cristina says. We have had members who have had reduced itch when they have improved diet: more water, cutting out processed foods, sugars and chocolate.
And the more expensive, high quality chocolate is better then cheap and cheerful chocolate. Something to consider...
Ohh I knew exactly what Christina was trying to say and I thought she expressed it very well. In fact it made me laugh out loud.
The worst thing about it is that I know myself that it's a curse that I need to rid myself of.
I'm one of the fools that started smoking again after a 10 year break. I don't know what possessed me... it happened when I was tired and not functioning very well when I had undiagnosed anemia about 4 years ago. I think that I just wanted something to perk me up. It didn't work! I still had anemia but I also had smoking to contend with.
If I could give any ex smokers advice it would be: no matter what is going on, no matter how you feel, no matter who else is around you - do NOT take the first cigarette. It will all be downhill from there.
I'll be back at the giving up treadmill again soon!
Oh you poor thing. I am exhausted but I am also working 50 hrs a week in a high pressured job and in some ways I have little time to think how tired and unwell I am.
It might be a long shot but could you try and keep fit or have something to keep your mind off your symptoms? Its hard I know but the less you think about it the easier it might be.
Have a go you have nothing to lose, you are shattered anyway!
One of my problems is that I did try to work through it for a long long time. I worked the long hours and in a very high pressure job. The result was that although I was in work and to all intents and purposes, getting on with things, i was becoming a serious risk to the people around me. I work as a manager in a service for very vulnerable adults - my judgement and attention to detail was really poor. I was beginning to miss things that were really important which could potentially have caused a lot of issues for the people who worked in the service and the people who used it. By the time I went off on the sick, I was on the point of physical and mental collapse.
All this is really hard for me - only 18 months ago I was bordering on hyperactive: working full time, studying for a post graduate masters part time, minding my kids, enjoying a social life, walking and occasionally running and reading almost obsessively.
Today, I can't read more than a page without having to go back to the start, my house is a skip, I sleep for hours during the day and if I exert my self physically at all, I get quite bad pain.
I've had to withdraw from an MSc course with only one module to go (the one I was most looking forward to) because I can't process information. Doing that broke my heart because my results this time round have been pretty good and I was hoping to go on and do a PhD after.
Since going off sick I have tried really hard to push myself in things like reading, writing, walking and generally keeping on top of things. I 'test' myself every day. All I have done is made myself even more exhausted and unable to do anything for days after.
I think I just have to accept that until I get a break from the symptoms, I have to take it easy!!
Your blog is so upsetting and so true for many of us. I to had a fantastic job
which I studied for many years for. I was fortunate to have a great life until I
was 32. I to had all the symptoms unable to concentrate, write as before. My
daughter use to ask me why I took so long to answer her. I didnt even realise
I did this. I had to give my work up long before my symptoms became a danger to myself and others.
I have a new different life in which I trully enjoy. I do my best to stay positive.
I was so fortunate to have a Liver transplant 2 1/2 yrs ago which has been like switching a light on.
I immediately felt so much better. It was so wonderful.
I wasnt able to go back to work because I now had osteoporosis due to long term prescribed steriod use, severe joint pains.
I do miss my job and have dreams that I still work there at times,lol.
I do enjoy my great life now. I wouldnt be here only for a person on the Organ Donor List who agreed to selfishly donated their organs. I do as
much as I can each day, as you say If you do too much you end up shattered
for the next few days.But my concentration is much better. I can most things
but walking and physical activities are really restricted due to pain from my joint pain. Ive been asking people around my area to sign on the organ donor register. So far Ive managed to get 102 signed. Its because
someone did for me. 3 people die everyday waiting on an organ they so badly need.
I send you my best wishes and happy times ahead !!!!!
Please quit smoking, I was a smoker too, and it doesn't make anything better. As for the tiredness, you just have to work out a schedule that works for you. Cook in the morning and reheat or make a bunch and freeze. I have done alot of that and it makes things easier and homemade. As for the itching, mine was terrible, I honestly think that was the worst part in the beginning. I took a prescription for hydroxizine, which is a stronger type of benedryll(antihistamine), there are also some lotions that provide temporary relief. Sarno is a good one, and some of the natural oatmeal lotions. And I couldn't agree with Mummofthree above, you can do anything you put your mind to. The more determined and a person is, the less likely he/she is willing to give up or give in. And even when you feel like total crap, smile I have done it while crying and then I will go look in the mirror and start laughing................Keep you faith, your determination and smile, it can really make a difference in your day.
Have they done a bone density test on you ? My worse dealings with the PBC have been the exhaustion and bones aching constantly , i told my GI that i felt so exhausted i felt as if i could just stop breathing ! and that was 3 years ago and it hasn't changed but i have learned my best time is the mornings as you by 2-3 o'clock i am beat so i get my son ( who is also 13 off to school then hit what ever i need to accomplish hard , that includes making dinner ~ my guys don't mind reheated food , bless them lol . you just have to adjust and know when is your best time and get things done and then if you need to sleep you have to give in as it only makes things worse if you fight it . I also had a bone density scan done and it showed i have osteopina / osteoparosis which is why my bones and joints are aching so much and i was told this seems to come with the PBC , my primary doc. didn't want to treat me with the medicine they use for it as she states it is hard for alot of people as far as side effects and i have gastroparesis ( which means my stomach is paralized so meds tend to stay in my system longer ) so i have so far just been using advil and hot bathes but plan on talking to her regarding the pain i have as some nights the advil just doesn't touch it . PBC has made me learn to slow down and listen to my body and that has been the hardest thing for me as i am a very much on the go type of girl but it does make things more bearable .
Robert has said it better :), thank you - though thanks to SC49 too :))
Fact is, smoking makes you ingest some extremely powerful neurotoxic substances (aka damaging the nervous system, not only in the brain but all over the body). And just like any other substance you take in, these too go through your liver, which ideally you want to protect, not stress even more.
I surely don't want to depress any smokers, but studies say that it takes up to 30 (thirty) years for a smoker's body, after quitting smoking, to reach the 'normal' level of cardiovascular conditions which a non-smoker has. That much time to take out all the smoking-related substances from your body.
If you REALLY want to quit, your will is your strongest weapon. But try this too , I have friends for whom it really worked
Off the record - that argument, "I can't stop smoking, it's impossible..."?.. Despite my understanding that it's an addiction with complex roots and really requires a very strong will - even so, it reminds me me of my gym trainer's T-shirt which Always has n impact on me - "Shut The F... Up And Train!"... SC 49, with all due respect, I think you can replace 'Train' with 'Keep Trying' and you'll get my point ;).
Seriously now... when there's will, there's way, especially if your health benefits from it. Listen to Robert and the PBCF, they know :).
thanks Cristina - i know exactly what you're saying. One of the great ironies in my life is that I work with people who are alcohol dependent so I have a good understanding of addiction! It's never easy to follow your own advice
and thank you to everyone else for your kind words and support x
Mumofthree they are Really not paying me to advertise the Compendium LOL... On a serious note, I know quite well, as a PBCers daughter and a volunteer,what the Foundation knoes and does for patients and how the Compendium helps.
Has anyone ever benefited form asking help from the PBC Foundation? When I tried to get help for my medicine, Uso, because I could not afford the full prescribtion amount and my doctor had to only prescribe me half so I could even take the medicine. I went to all the sources listed with the foundation and everyone of them stated, we dont have the funds or we dont carry that medication!
I think the PBC Foundation is a voluntary organisation aimed at providing information advice and support to people with PBC and their families. As far as they can, with very limited resources, they contribute to PBC research. They don't have funds to distribute as such and would only be able to point you in the direction of people who might be able to help. I have seen on other forums that people have been able to get assistance directly from drugs companies but I am not sure which ones.
I gave up smoking 3 years ago, and it made to feel much better. I have seen myself an elder, badly looking lady, who knows what harm is making to her poor body, and realised, that I can't be so silly. Slowly went down, and for my last cigarette I made a little celebration at my girlfriend's family, and promised myself just in their presence. Carrots helped me orally
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. PBC has made me learn to slow down and listen to my body and that has been the hardest thing for me as i am a very much on the go type of girl but it does make things more bearable .
Newly diagnosed, and a bit complicated
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Fatigue and nausea- good days and bad days?
