I would love to know how people have been able to beat or manage fatigue and problems with brain fuzziness (for want of a better word). Does ursofalk help with these symptoms?
I am new to pbc - diagnosed just yesterday. I have been ill for about a year and off work for about 9 months. The main issues that drove me out of work were fatigue and problems with my memory and concentration.
The fatigue is overwhelming and apart from the odd 'good' day, it has got progressively worse. When I start feeling tired, it feels like being drunk - i get sort of dizzy and sometimes the room feels as if it has moved (for the record, I don't drink!). Then, the tiredness just overwhelms me and I have to sleep. I have been known to fall asleep in mid conversation and as a general rule, I need to sleep for about 3 hours a day - once in the morning/early afternoon and once in the evening. If I don't sleep, I can't function at all.
The problems with memory and concentration are horrendous. I have gone from being an almost obsessive reader and doer of puzzles to someone who can't concentrate long enough to read a single page at one sitting. I haven't read a book for nearly a year. Even when I can read a bit, I can;t seem to process or make sense of the words.
This has been catastrophic for me because my job involves a lot of reading and report writing. I was also studying part time for a MSc and I have a child (13) who needs help with homework.
These issues have really caused me problems - especially. in work. I was forgetting everything, taking a life time to work through reports and was generally becoming a liability. The frustration of not being able to stay awake and focused, made me snappy and pretty much a useless and unreliable colleague so I had to admit defeat and go to the doc. I thought I had alzheimers!
9 months later, I have a diagnosis of PBC and I am worried that the treatment for the PBC is not going to alleviate these symptoms. I am fairly sure that my employer is soon going to sack me unless I can give them some assurances that I will be back fairly soon and functioning at an acceptable standard. Any help/ advice/ information that I can get would be very gratefully received.
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SC49
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I was diagnosed 20 months ago and am taking urso. I too suffer with fatigue, lack of concentration and sometimes think I am losing my memory. Do you fight against the fatigue because I did all the time. I got to the stage that I was hardly able to function and became really ill and very very depressed because I felt I was a failure to myself and family. For a long time no one in work knew I was ill. If anyone asked I just said I was having a bad day with pain in my back and joints , which they were aware that I had problems with. I eventually broke down crying uncontrollable (unfortunately my release) in work simply from getting a phone call from my sister asking me how I was as she knew the night before that I was not coping very well. I could not focus properly and felt I would pass out. My sister and her husband had to come and get me from work as I could not drive myself home. My sister took me straight up to the GP's. I was told that as I was fighting my condition so much my body was telling me enough was enough and was virtually shutting itself down. She advised me that I must give in to it. I won't say it was or is still easy to do as I felt like a failure but I have learnt to listen to my body more now. I know it is not easy to do when you are at work but just accept it when you are at home and it will get better with time, just give yourself time to adjust. I still have lapses of concentration and like you find it really difficult to read a book, sometimes only a few pages and my eyes stop focusing, so when the words start dancing I stop reading and try and do something else for a while and go back to it later. When in work I conciously have to concentrate really hard when having to read or write a lot but accept that I am slower sometimes getting through really complex tasks, but don't beat myself up about it, and as long as I make sure I get enough sleep at home I manage to get through it. I work part time (3 days a week) I know I would not be able to do more than that, but that was the shift I was on before becoming ill. If you are full time is it possible to shorten you hours, easier said than done I know if your circumstances give you no other option. I like you have a 13 year old, but they will learn to adjust along with you, and you will be able to give them the time they need. I find that giving in to sleep really does help to feel a little refreshed after, I now find that I can nap for about 30 minutes and wake up feeling alot better after. Its probably not been very easy for you over the last year because you did not have a diagnosis but now you do, you can and will eventually learn to adapt, just listen to your body.
Hello still not confirmed however most likely i have this too.
I have tried aloe vera products to detoxification your body, theese are drinks to have every day and I have to tell you my fatigue has almost gone, odd bad day, also try to eat as much as fruit you can, grape fruit every day is faboulous, hope this helps.
it appeared that also the itchyness gone down a little bit, hope this can help, if you want the name of the products let me know.
Hi - Im afraid pacing is the name of the game. The fatigue wont go but you can learn to manage it (sort of). For me power naps during the day are invaluable; like you the room spins and my legs give way etc etc when I reach that point. I have two children, 12 and 14yrs. Being a "mum" with PBC can be difficult if for no other reason then children are exhausting! But they do learn to adjust as we do and hopefully will do there bit to help.
It does take awhile after diagnosis to get your head round what has happened to you but the PBC Foundation will give you loads of support and information if you want. So will people on this forum as we all understand what you are going through.
Good luck - and remember there is life after PBC it is just a different one.
Hi, it's horrible when you are first diagnosed but at least you know now what was causing all that. I had the memory thing and dizziness. I was teaching English at the time and I couldn't answer grammar questions for my students, it was embarrassing for me and the students, so I left the job. My dizziness comes and goes. I was diagnosed in July this year and have been taking Urso since then and my fatigue has improved a lot. I have even been out cyling this week and was able to cycle up some steep hills without feeling dizzy, so I am really pleased about this, as I felt I was all washed up and life was finished with me. Eating a healthy diet, loads of water and regular excercise helps to feel better. If you go over blogs and questions on this site there is some good advice on this. Listen to your body, rest when you are tired. Welcome to the pbc world!
i agree with val above, don't push yourself. Sounds simple but if you can't do it , leave it til another day. I have been diagnosed 14yrs and had to take ill health retirement 3 years ago at age 51.
Fatigue has always been an issue and has got progreesively worse, however positive mental attitude is essential. I go to bed every afternoon without fail, as even missing on day sends me in a downwood spiral
Listen to your body and be gentle with yourself, avoid stress if possible and use relaxation and meditation
Thank you so much for sharing your experiences. It is a great relief to know that i am not the only one!
Getting a diagnosis has been a strange blessing. I was beginning to believe that it was all in my mind (even though the liver tests were saying otherwise) and I was started to believe that I was suffering from depression even though I knew i wasn't depressed (if you know what I mean). It is almost a relief to know that i have 'something' - I feel now like i can find ways of adjusting my life to make it manageable.
I can put up with every symptom apart from the mind stuff and the tiredness. mumofthree and prades - you have described the situation that i have experienced so accurately that I could have written the same thing myself!
I normally work full time but i have been off sick since January. My next fight now will be to get back to work and I suspect that won't be as easy as I think
In the meantime, I don't feel so bad about my obsession with sleeping.
Thank you again everyone x
Hello SC49.
Well like yourself I was working full-time (usually about 48hrs per wk at the time) in 2010 when I started with the itch. I was feeling very fatigued at the time and would come home from work which would be around 6p.m. and sit down and fall asleep thus skipping the evening meal on what became a bit too frequent. I thought overwork at the time as I'd not had a holiday for 6mths at the time (my colleague was on sick leave and no other shop as I as was in retail would enable the cover) plus very long days an no two days off in a wk together.
It was only once I had a 10 days holiday on my colleague's return after 7mths then of working full-time did my husband and I sit back and evaluate our lives. At the time I was in the early stages of various blood tests and was about to have a scan. I had only been married just over a yr at the time and had made a bad job change in 2009. My new husband said he would like it if I quit on our return from holiday so we discussed the pros and cons plus I was fortunate that I still had a small income from my first husband's employer (I was a widow on remarriage) that I keep for life (tho' taxable, that's another story!).
I quit my job and I did notice when I finally got print-outs of all the bloods I had done during 2010 on diagnose of PBC Dec 2010 I looked thru and noticed that in the 2mths from quitting my job Aug 2010 up until having the AMA blood test in Oct 2010 there was a slight improvement in the LFTs and that was without any urso (got that Dec 2010).
With not working and not knowing at the time if anything was wrong, I started taking control of myself, attempting to rid myself of whatever as still thought 'something and nothing' as I'm sure a lot of us do. The fatigue started to slowly disappear and with a combination of my attempts to try to rid myself of whatever plus not being in paid work (I was begged to go back voluntary to a local Hospice shop where I had worked for many yrs prior to getting the full-time job so I returned one day per wk and am still there), I did feel much much better.
I think once you get a diagnose tho' you don't want it as I still find myself in a denial stage after almost 2yrs but knowing you do start to try to more care of yourself and I have found that for me, fatigue only exists if I have not had a good night due to the itch where I have only slept a few hrs and it has been very broken sleep. I might sit down over lunch and evening meal but I do try to keep on trucking throughout the day otherwise I myself do know if I did nod off during the aft now, I find it very hard to actually wake myself up after awhile and then I feel even worse and it knocks me out to sleep at night which I would loathe if it is going to be a good night with relatively no itch.
Urso has made some improvement for me with regards to the itch. Not irradicated it totally but it has been somewhat better than it used to do but I do not know at present if it will return to how it used to be eventually or not as yet.
Me and taking urso has only made me continue as I still don't want to take it simply because I have seen positive results due to using it via the LFTs.
Let us all know how you are getting along, I think fair to say at present you are in the 'early days'.
Thank you for sharing your experience Peridot. I appreciate it.
I am definitely in early days and probably in denial! I was so glad to finally get a name for what is wrong with me that it seemed like a huge burden had been lifted. I am betting though that the anger and frustration will emerge as I learn how poorly informed people are about what PBC is. Awareness raising may well be my new mission once I get my working life sorted out.
I'm very 'lucky' with my sleeping - I could happily sleep for Ireland. Once I am asleep, that's it. It might take a while to get sleeping (like if I am itchy or sore) but once I am gone, it would take something very special to get me awake again. At the moment, I sleep for about 3 hours during the day and then I sleep through the night too. Hopefully the day time sleeping will abate once the drugs kick in and hopefully the night sleeping will as normal.
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How do you know what stage you are at with PBC
How many days supply of urso do you get prescribed?
More blood tests and sudden death of friend...
Really bad memory and concentration.
does having pbc affect your immune system in so much as it is weaker?
