Miserable

I was dx. In 2015 with pbc. I am a 60 year old woman. Looking back at my test results, I have had this since 2011 and the dr I was seeing at the time treated me for depression. Today I am still tired, even more so, and my bones hurt all over. I see a rehmatologist next week. I have a positive ANA also. My legs feel like they weigh a ton. Just to come up the stairs is a chore. I feel like I am crazy, because I am not the type to whine and feel like I am two people. Does anyone feel like this?

Thanks, Pat

13 Replies

oldestnewest
  • Hello Patriak1.

    I was diagnosed with PBC December 2010 after starting to itch severely back in early

    March that year.

    The consultant informed me when I saw him on my first visit following his diagnosis (he asked my GP to inform me of his diagnosis and write a prescription for urso) I probably started with PBC 'a few years ago'. I think unless you have your bloods taken when you are asymptomatic (free of any symptons you know about that are one of PBC ie itching) and a doctor picks up on above normal LFTs (liver function test) and chooses to investigate further then it can be more than unlikely we would be informed we had PBC. There are other reasons that at times the LFTs can be higher than normal, other medications can cause them to rise and also bone issues too. It seems that a lot of patients diagnosed with PBC tend to complain of certain symptons that then leads to PBC diagnosis.

    I think it is a bit of an odd thing this PBC at the best of times. I think we have days where we can be down as we don't feel we are doing so well and then others we can feel as if we are quite OK. I know the itch in my case has altered over time taking urso. I still have it but it seems to just be confined to night time. Though this poses a problem in that I often find it difficult to sleep through the night I feel it is far better these days than it was back during 2010 when it was 24hrs a day.

    We can have bone issues with PBC due to mal-absorption of certain vitamins (D for instance) and this causes a knock on effect to make us more than likely to feel more down in the dumps.

    I think any form of long-term health issue can cause one to feel depressed as it is on-going and in my view gets monotonous and makes one weary after some time. I know for me if I'd stopped itching after being diagnosed and taking urso I'd not actually know I had PBC.

    I know in the early days of diagnosis (I was 46 when I was diagnosed) I had down periods where I might stay in bed of a Sunday when nothing was doing. Over time I just decided that I would make the best of life and enjoy it. I stopped worrying about what PBC might become as it might never happen and to me it would be time wasted.

    If you have retired or no longer working then I'd just take my time doing certain things. I know this might take some time as you are quite newly-diagnosed but as more and more time passes and you appear to still be doing well it can change your perspective somewhat.

    At the end of the day as much as we suspect certain things (I know for me I am convinced I went on to develop this PBC due to a vaccine I had for work but I'll probably never find out), we just have to put it to one side and try to get on. I took some time accepting that PBC was here to stay as in the early days I just used to think that if the itch vanished, I continued to take the urso and the bloods returned to normal (as yet they haven't) then I'd be cured of PBC but that isn't going to happen.

    I am sorry but I do not know anything about ANA except it stands for an antibody so I cannot comment there.

  • I too try to go with the flow, so to speak, and always try to be positive. I've had a tx Dec 1996. I was then diagnosed with PBC again in 2004. Annoying but not letting it stop me arranging a holiday to Oz and will do what I can. x

  • I have the leg problems, mornings are the worse but I have been taking vitamin D as that is meant to help with bone pain and also having a small can of tonic water before bed as that help with circulation in the legs and I have already seen an improvement (maybe in my head) but it seems to be helping me, it's worth a try ;-)

  • Ask for your vitamin D checked helps with the fatigue & aches & pains xx

  • Hi Pat, sorry you're feeling down. Sounds like you might need your vit levels checked. Getting used to this PBC can take time. Has your doc put you onto Urso? That can take a little while to take effect. If you've had PBC for 4 years before getting treatment it will take a little while for your body to respond to treatment.

    Have you come to terms with your dx ...being told you have this condition is flooring in itself so can take a while to accept. Try and take some time to look after yourself, get some pampering, if you can take a holiday in the sunshine...sun is good for the liver and good for general well-being. Have a look at your diet...are you eating anything that might be putting an extra strain on your liver?

    I was dx Dec 2015...and it's taken until just recently to come to terms with it. But I'm fighting...I take a herbal tincture, I have milk kefir for breakfast and try and eat healthily (most of the time, but I'm no saint!!). I still get a bit more tired than I should (I'm 48) but I've accepted that when I'm tired I need to rest. I'm lucky in that I don't have joint pain as yet, so I feel for you.

    Badger those doctors to have more tests done re vitamin levels.

    Good luck, hope you feel more positive soon

    Hilary xx

  • Yes I do (age 65) - like you looking back it started quite a time before having a diagnosis. Also first put on anti-depressants. I have recently got a copy of some of my early blood testes which indicate the AMA(anti-mitochondrial antibodies) where preventing them from being certain about ANA. ANA (Anti-nuclear antibodies) is indicator of Lupus that also has pain and fatigue. It is a pain wanders around.

    I don't know if your pain wanders around? Mine does but now more joints are consistently painful on top of bone pain and muscle pain.

    I was part of a medical trail for the fatigue element of PBC at Newcastle university (UK) and found that along with increased energy my pain was very markedly reduced as was the itch. Unfortunately it only lasted several months after the infusion ( apparently it reduces the antibodies if you weren't on the placebo). What ever I was given (placebo/drug) I I'd dearly love to have on a regular basis as I got my life back. Now the pain is back in a full blast way and along with fatigue that has taken over life. I tried to do what I could do during the trail period just after infusion just recently and I landed up being unable to move ( needing wheelchair assistance) and in total agony for several days.

    Tonic water helps with the increase of cramp (it's the quinine in it ). Hot bath helps easy it so I have a better chance to get to sleep. I am seeing a specialist next month and the trail doctor has indicated that they will put me on Urso so maybe that will give some reduction. If I have lots of sleep the pain is less in the morning ( but not the stiffness)and it has become a kind of indicator of having had sufficient sleep and rest.

    The PBC foundation has really helpful info and their course on self management was great and discussion with other people with it just highlighted how diverse it is.

    hope this helps a wee bit

    take care,

  • Hi 😊I was dignosed December 2014, after a urine infection, or so I thought my symptoms were fatigue pain and a tugging feeling I had in right side and generally feeling ill,my gp was brilliant, she sent me to a liver consultant had bloods done and confirmed pbc, I was totally shocked to say the least as I had never been ill in my life started urso and felt much better after a few weeks, only this year started to itch mainly at night lasts a few days then leaves me, you have to manage this pbc, as every day is different, am working but do get tired easy,always feel better when the weather is good plenty of vitamin d, so don't worry we are all with you take care ☺☺.

  • Hi

    I was diagnosed over 20 years ago and never had many symptoms or so I thought..I was also diagnosed with fibro myalgia then which wasn't too bad but lately my lower back is so painful with a touch of sciatica ...it effects me sleeping and pain killers are so reduced because of liver they make little difference ..I will ask for to check for thinning bones. Might be good that you do that too .I am 66 and now at stage 4 pbc but luckily my itch is not too bad

    I just try to get on with life but I do get low over the bone pain and that I have a shorter life span now ..been told againI have 10 years and by then I will be too old for a transplant unless I become very ill.

    Until I had my stage 4 diagnosed Ididnt worry about it and I am sure you will be fine as it is a more recently diagnosed..are you on anti depressants ? They can make you tired too so I have been told,

    Take care

  • Hello Pat - you are not crazy and you are not whining. You are struggling to come to terms with the PBC diagnosis - I struggled too for a long while and I am sure lots of us do the same - it is very stressful and stress brings it own problems.

    You are also trying to cope with debilitating symptoms like fatigue and pains so please be kind to yourself and give yourself some space to feel bad about what has happened to you.

    When you learn more about your condition, you will gradually learn how to cope and hopefully, with the help of Urso, your symptoms may lessen.

    Keep tuning in to this great group who really understand what you are going through and will always support you.

    Let us know how you get with the rheumatologist. Kind regards. Diane

  • Hi Pat,

    Again ... absolutely ... you are not crazy and you are not whining! You have an awkward condition that should have been diagnosed and treated earlier.

    But ... you know where you are now, and there is loads of help and support on here.

    I second everything that has been said above. Ask to have vit and mineral levels checked, as PBC can cause a drop in the absorption of fat soluble vitamins, especially vit D, and this can then have a knock-on effect on calcium levels and cause arthritis type issues, often temporary. Also, if you test positive for ANA, as well as (I assume) AMAs (most people with PBC test +ve for AMAs), have you also been checked for other autoimmune conditions? When they thought I had PBC I was checked for every autoimmune condition under the sun. I ask because I think ANA is linked to other things.

    Above all, I would contact and join the PBC Foundation - there is a link to their site at the top of this page. On the website you will find contact details to phone or email their trained advisors, who are brilliant. There is loads of sensible advice and info on the site, but if you join (it's free) you get futher access, as well as a handy 'fact-file' on PBC that will help make sense of everything, and be a great guide for talking to GPs and consultants. Also, there may be a PBC support group close to you, depending where you live. I'm sure Peridot mentioned it, but the 'British Liver Trust also have a good dvd on PBC: they have a site here, on 'Health Unlocked' so if you Google them you can also get advice and the dvd from their advisors.

    Above all, try not to worry. All autoimmune conditions thrive on stress, so treat yourself, coddle and spoil yourself - I know it's easier said than done, but worrying does nothing. Think what you love to do, and do it. At least you know where you are now, and hopefully things will get ever better. Also, come back on here and ask as many questions as you need to.

    Take care, Gritty

  • Hi yes I have pbc 12 yes and my legs feel stiff and heavy sometimes trying to go upstairs I have to lift my legs as it's impossible to lift them. Told GP he said it's arthritis take pain relief ..doesn't make many difference

  • Hello Patriatk1, dont worry, you are not alone. I am 48 and I was diagnosed in 2010. I think as far as myself and from what I read here, we all suffer with the same symptoms. I promise things will get better. This site is very helpful as well.. . Please keep us updated with your rehmatologist appointment. Sending you a big warm hug . -ROSA

  • The same thing happened to me - dr. kept telling me they did not know what was happening - from 2011 and dx in 2015 with PBC - stage 2. Angry at first, then accepting and now 8 months into this i try not to think about it everyday and so I make plans for the things I want to do to move on with my life.

    enjoy everything - although I still have to argue with the hubby every once in awhile.

You may also like...