Pain and fatigue

Hi PBC family

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

12 Replies

  • 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.

  • Hi Twill

    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

  • I second so much of what has been said above.

    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!

    Take care x

  • Yes i was going to ask that as well,pbc will give you RA

  • 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.

  • I wish i could find someone in the united states to talk to, it seems i have shut out most of all my other friends

  • Hi Tama,

    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.

    Hope you find something.

  • Hi Tama

    I am in the UK so unable to meet up with any of the lovely people in the states X

  • 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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