It's been a while since I wrote anything on the forum but I read it everyday.
As I have said before I was diagnosed in January this year and it took months to come to terms with it. I still get worried sometimes when I feel unwell.
Reading everyone's post has really helped me believe the fatigue I get and the pain
In my joints especially in my legs are connected with having PBC.
I have had so many tests because of the pain and I know I have age old wearing discs in my back but the rest of the pain is unexplained and have been told to have physio and join exercise classes. Some days when I have more energy with good intentions I think sort yourself out girl and make more effort but I feel too tired and motivation is lacking. Don't get me wrong I don't ever sit around and feel sorry for myself there r so many people out there with terrible illnesses and heartache.
I wish I could meet up with all of u, some days I think it would be nice to have a friend with the same condition to socialise with, although I don't wish this on anyone. I know sharing our troubles on the forum is so helpful and I wish all of you prolonged good health and happiness.
Tricia x
Written by
Twill
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Have you looked into a support group in your area? Maybe your consultant could put you in touch with one. I found one in my area, a small group of lovely people. We only meet once a month and don't always talk about PBC but they are there if I need them and it is good to have people to talk to to know exactly what you are going through.
Hi I found out last year I had PBC I'm having the pains in the legs arms itching and I get so tired. I don't write much on hear but like yourself I read all of them and found that most of us are getting the same pains and tiredness so it's good to read and know we are not alone. Like yourself I have a bad back and I don't sit down much or ever feel sorry for myself I have to live with this now so I try and get on with it. Good luck to you and keep your chin up xx
Hi its Mandy in Canada here, well feel the same way. Im so tired body aches its hard to just get through the day but I have to work full time to live pay the bills. I work go home and recover for the next day. Yes I believe all the stiffness pain aches are related to PBC to and insomnia. Thanks for sharing yes its nice to here from others.
Sorry to read you have pain in your joints. It is hard to exercise but I do find a little walk no matter how short gives me a lift. Also you say you'd like to meet up with people. Is there a group local to you. I see you are in the UK if you look in Bear Facts magazine it will give local group leaders and meetings. Hope you manage this.
all the above comments could apply to me as well joint pain being the most difficult to live with I wish there was a medicine to stop all these but at the moment we all have to deal with this as best as we can personally I seem to get a flare up every so often which usually comes out of the blue I just try to carry on regardless when I am able then when I get a flare up I have no choice and have to slow down a bit which I hate it is lovely we all have this site to talk to best wishes Chrissey
Also, if you don't find a local PPB community via 'Bear Facts', why not say (on here, in a new post, and weekdays are better as more folk check-in) which area you are in , then people in your county, area, or city could get in touch with you via a 'private message'.
Also, given the muscle and joint pains, have you been checked for all other autoimmune conditions (eg people with AMAs often have others): plus, PBC can also cause a drop in Vit D and calcium ... have all your vits and minerals been checked? NB don't self-medicate without being checked!
Hope this helps. I'm in Devon, but I'm not much use to real PBC sufferers, as I don't yet have it, I'm only 'at risk', as yet with just AMAs, and no symptoms - though I do know the fear if not the pain!
Hi yes like you I have terrible joint pains in my legs walking more than 10 mins and I am in agony my limbs feel like dragging lead. I would love to join an exercise class but depressing I can't manage. Went to Dr on Fri last to say my leg pain is getting worse but all I got was stronger pain relief!!! Yes I also would like to meet likewise people to me but living in Essex there are no Pbc groups to join. I used to be very fit and exercise every day so I make myself go out even for 5 mins or so I refuse to let this beat me.
There are quite a few people - from the US - who post on here. I can't remember names, but you could place a post and ask for contacts ... saying, roughly where you are. Then anyone interested could reply on here or 'PM' you.
Or ... a bit more time consuming, just scroll back through posts ... or, I think the site has a facility (somewhere) for us to find fellow PBC sufferers in our own areas - though I don't know if they includes the States.
Hi i found out i had an under active thyroid afted 1 year of beng diagnosed with PBC. I like you was suffering with joint pain particularly feet and hands but during the night i was having trouble sleeping because of what i can only describe as' body stiffness ' was waking me. I spoke to my heptologist and following bloods she sent a letter to me and my GP informing me of my hypothyroidism. I also need vit d supplement on prescription. .my aches have much imroved . I do have days where i'm drained and ache but its just us. Yoga classes have made a difference to me too. . Take care
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Fasting and PBC
Shaking and joint pain.
Fatigue??
18 and newly diagnosed with PBC 
