Hi, I was diagnosed with PBC earlier this year after going to my GP suffering from fatigue and heavy legs, it had become so profound that I had convinced myself that I had MS. I was wondering if this is a symptom of PBC or something unrelated. None of the literature I have been given refer to symptoms such as this. Does anyone else have a similar experience?
Also, since Diagnosis I have had chronic constipation. My doctor prescribed my Fibogel, which I have to take daily to keep things moving. I have been told by a friend that this could lead to a 'lazy bowel' which worries me greatly.
Any feedback would be greatly appreciated.
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Shiloh119
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Hello not sure what you mean exactly about 'heavy legs' but I am certain that back in early 2010 when I started itching and at the time I was suffering from fatigue I might have experienced this. I used to think that I was not getting anywhere when walking out and about at times. I never thought about fatigue due to my full-time job at the time as I was working above and beyond my job description (managerial post). It was the itching that concerned me and after a fortnight of it 24/7 I took myself off to see the GP and that then got me on the road to being diagnosed with PBC Dec 2010.
For m e fatigue vanished at some point during 2011. I get tired at times as the itch has somehow resolved to night time so it often causes broken sleep thus carrying over to the following day where I get tired from 3p.m. onwards.
I started taking urso Dec 2010 and for me I did find that I started experiencing constipation which was something I was never prone to prior to urso. I had temporary side-effects on starting the urso - heartburn and also a bit of bloating but I did think the itch was worse for awhile. The side-effects vanished within a few months but the constipation I have had from time to time but I tend to add more fibre to my deitary intake now to compensate and I find that I am on an even keel there.
Constipation can actually lead to haemmorhoids (piles) apparently. Add a bti more fibre to your diet and see how that goes first. I tend to have a supermarket brand wheat biscuit for breakfast and alternate between this and porridge. If I use instant that I make with milk I often throw in some linseed that adds fibre and apparently it is a good source of omega3. (In the UK Aldi sells it in packets that you store in fridge once opening and it is by far cheaper than anywhere else I've seen. You can get it milled with other things like goji berries that I have tried too.) I eat fruit and vegetables a lot so that is more fibre in itself. Also make sure fluid intake is adequate. I tend to switch to red tea with a splash of milk following the evening meal as it is supposed to hydrate as opposed to dehydrate like standard black tea can.
I found in myself that it has taken a few years for the symptons of PBC to alter somewhat, it didn't occur for me within the first year though it slowly started to alter as the bloods did start coming back better and better. If I didn't itch at night I'd not know I had PBC now.
It has to be noted though that if you are worried about any changes seek a doctor's advice. Even though we have PBC we can also have other things from time to time. I think if you took yourself to the doctor with fatigue and heavy legs then it seems that you have been checked over but if it continues to be on your mind might be worth asking again or perhaps asking another doctor.
Thanks for your reply, it's good to hear that the symptoms such as fatigue and constipation can improve, I sometimes worry that I will never feel 'normal' again.
I consider my diet to be pretty good and am mindful of what I eat, trying to keep to whole foods whenever possible, so I was surprised by the severity of the constipation. I will now keep an eye on my fibre intake and shall try the linseed, thanks for the tip.
The linseed is milled so like a powder consistency as opposed to looking like seed in the pack. From what I have read, by being milled it is easy to digest and add fibre to the diet.
I know when I make a very mild curry with chicken usually, I boil brown rice as opposed to white so that there is more fibre.
I try to eat my own home-cooked foods, even more since being informed I had PBC when I was 46 back in Dec 2010. I was 51 a few days ago and I think in the early days of being informed you have PBC it can be difficult taking it in and wondering about the future. I know at the start I wasn't sure if I'd be around 5yrs down the line but it's gone 5yrs now since I first starting itching and I think I'm doing well and currently I am having repeat bloods at 6 months and I managed to get the GP some time ago to give me urso for 90 days at a time due to having to pay the NHS prescription charges in the UK.
The one thing in PBC that we may never be free of is fatigue and also itching unfortunately. Seems to be something that urso can only improve on but isn't guaranteed to eradicate. But as I look at it, the better your system becomes there is the possibility that you might not be as badly affected with these symptons and despite my reservations about the urso in the early days, I have just come to accept that they are now part of my life. I have only taken urso in the last 4yrs and hope to continue to do so. I find it odd that prior to Dec 2010 I'd not had any medications from a doctor or over-the-counter since a short course of antibiotics in 1999.
Hi, o yes, I have "heavy legs"! My gastro doesn't understand what I am talking about but it is like an in-built resistance and I have become very slow. Sometimes it is as if I am making my way through meter thick snow. For me it is the worst in the morning and then it feels like the body gets used to movement. I wish there was a pill I could take to make it go away but warmer weather and a lot of soft exercise make it a bit better. Also, when I am off work I don't notice it as much because I can take all the time that I need.
My legs have changed too. They look horrendous! Please let me know if you know more about this and if there is something that could be done about it...
Hi Jojowen, that's a very good description of how it feels, I don't think that they look any different although I know it is much worse when I am tired and when I wake up I feel like I've run a marathon. My feet are also very stiff in the mornings and I tend to hobble about for a couple of minutes after waking. My doctor says that my diagnosis was co-incidental and that I presented A-symptomatic for PBC and so I have presumed that this leg heaviness is not a symptom as this is why I had the blood test in the first place. I have to admit I am confused by it.
Heavy legs, heavy shoulders and sometimes a heavy heart but......I'm looking forward to the future and I'm sure my healthy lifestyle will make me feel better soon. The fatigue is the worst though, I have been off work for three months and just when I'm starting to feel the fog clear, it comes back again!! Retirement seems to be the best solution as my job would only add other complications. Everyone is different though so I continue with the Meds and do a s much as I can. Reading this I sound quite down today but I'm not, I'm just really tired and guess it's time for a nap! I'm hoping that with all the research going on, fatigue will be a thing of the past in the future!
I hope so CathieG, the fatigue is really debilitating and I find it hard to get through the day without nodding off. I'm hoping that a few months down the line I will find some respite from some of these symptoms. I've been taking Urso for 3months now and the only thing I've gained is weight and constipation. 😁 it's early days for me so I'm hopeful that I will cope with it all a little better with time. Thank goodness for this forum, I appreciate everyone's replies, I know I'm not alone in this journey. Xx
I know exactly what you mean. I have to hobble first thing in the morning when I get up and when I have been sitting for any length of time. Feel as if my legs have aged about 20 years faster than the rest of me.
Thank you for your reply mojo62. It is interesting that I obviously am not alone in having these leg problems. I wonder if anyone knows if it is due to the PBC and if so why a liver disease would affect my legs? I definitely have a lot of learning to do about PBC.
I too hobble when I get up from bed and chair, the bone pain and itching is horrendous at the moment, I feel like an old old person instead of 57 years old.
I am incredibly lucky (and thankful), not to be suffering from the itching. It seems to be the one thing that most people with this disease have in common. It must be very distressing.
Shiloh119, fatigue is something that a lot of us suffer from and its very difficult to manage if you have previously been very active or relatively fit. There is not a magic cure for this , therefore we should try and manage it instead. Please, if you haven't already, maybe consulting with your GP that there are no other possible causes for the fatigue. Also, if you haven't already, think about joining the PBC Foundation. Its free to join and they have a wealth of knowledge and experts in their fields who they can source information from along with a helpline that you can contact if you have anything you wish to discuss.
Thank you posh, I have joined the PBC foundation and am finding it most helpful. I am really at the beginning of my journey with this disease and am starting to realise that I will have to adjust to, rather than fight, symptoms such as fatigue. I guess I'm just feeling a little bewildered by it all and somewhat frustrated by it too.
That's understandable. Its a case of trying to manage your condition and finding what suits you. If you feel really tired then rest. there is a 24 hour helpline you can use as a member of the Foundation. This should help if you are in any doubt or have any anxieties.
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