Am currently going through diagnosis process. Gastro and GP suspect PBC/AIH due to repeated blood/LFTs. I am still waiting for biopsy (estimated end of Sept). For the last five weeks I have had pain in my upper left arm. Oddly, not really sure where the pain is - I can move my arm but lifting it out and up simultaneously is really painful. I haven't been taking anything for the pain but will probably book in and see my GP if things aren't better in a week.
Thanks for sharing your experiences. I find all the posts quite reassuring at this difficult time.
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JaneAnderson1966
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Welcome to the group, you will find lots of help especially at this early stage when knowledge on everything is a bit sketchy.
One of my big mistakes has been to assume everything that is wrong is PBC related, twice now I have found this not to be the case.
I think it is very wise of you to book in to see the GP everything takes so long here in the UK. There is not much to be taken with PBC without medical advice, paracetamol is the only recommended pain killer however a little warm treatment may help to ease this pain a little. Do you have a wheat bag or hot water bottle? Use of this type of external treatment can be soothing.
Thanks for your reply. I will make an appointment ASAP but in the meantime will try some of your heat methods and buy in some paracetamol. I don't know about how you felt in the early days of diagnosis but I am finding that I am more aware of really minor niggles in my body (tiny twinges etc.) and constantly worrying that this is the start of deteriorating health due to PBC.
Thanks for your advice and I hope you are keeping well.
Hi again. I know at the early stage everything is dire but the best thing I read when diagnosed in 2006 is that you are more likely to die with PBC than because of it. Robert from the PBC Foundation has also at some time mentioned a person over 100 who had PBC. Stress however is an enemy to us so do lots of things to help relax and content. Hope the GP appointment is quick.
Thanks for your support; it's really appreciated. Not sure how to reduce stress as I am a secondary school teacher and just started back at work this week!! Hope you are keeping well and will remember what you say about dying with it rather than from it.
I am in UK. Since I originally submitted this post (a year ago), My diagnosis of PBC/AIH was confirmed by biopsy. Was put on URSO and steroids and the steroids cured shoulder pain over night. However, 6 months later I was weened off steroids as specialists are no longer convinced I have AIH. Whilst I was glad to be off steroids (I had put on weight and noticed body hair increase), the joints all over my body started to hurt (and still do 4 months on). Had RA and thyroid ruled out and bone scan came back normal. Have just started to take turmeric hoping this might help. Shouldn't moan as pain is not unbearable and feeling better in other ways.
Anyway, Mrsfancypants, where are you and what is your diagnosis? I am aware that I have off-loaded on you and now feel free to do the same. It's nice to connect with someone new through this site.
Hiya, I think I need a friend to share this hideousnessness. I think we are of a similar age. I’m in the uk up north, diagnosed jan 17:::: ruined my life Will never accept but I can actually talk about it now without bursting into tears ( mostly) where are you in the uk ?
Hope you are feeling a little better today. I am 52 and live in Lincolnshire. I have two adult children (neither of who know about my condition) and my first grandchild is due in a couple of weeks. It sounds as though you are just a little way behind me in terms of emotional response to this devastating news. I spent the first month after diagnosis bursting into tears and thinking my life was over but I have tried to put it into perspective by thinking of other 'terminal' illnesses it could have been. I think if we continue taking the URSO and trying to look after ourselves, we should last a long time yet. You never know when your number's up anyway!!
The condition does suck though!! Whilst the joint pain is my worse symptom at present, I have some itching which has reduced somewhat and is now bearable without additional medications. I have dry eyes (easily sorted with Hycro San drops) and sometimes a little bloating.
What symptoms do you have? Do you have any support at home?
Please feel free to contact me anytime for a chat or just to offload. You will get your head around this and regain some sort of normality in your life but the diagnosis is such a huge shock I suspect in could take months or years to gain some acceptance.
Hi. Don't know if u have heard of FELDENKRAIS .. it is marvelous and extraordinary. MOSHE FELDENKRAIS created it many years ago. It is a wonderful and integrative approach to understand the body and how movement happens and how we get injury. I particularly found it was and is a lifesaver .. I began when I had shoulder injury. Spectacular. ..
Hi Jane. Feldenkrais integrates into every area of life. With the right instructor and doing the one on one .. it is fabulous. Have been doing it and recommending for years. Keep posted.
I was diagnosed with AIH/PBC about a year ago. Have been on ursodiol and azathioprine. In the last few months I wake up with inflammation in my joints ..hands, feet, hips, neck...this seems to work itself out through morning but makes it difficult to move around in sleep. I also have shoulder and upper arm pain which makes it difficult to sleep and to do any movement where I raise or lower my arms. I've been tested for Rheumatoid Arthritis which was negative. None of my doctors seem to have any answers or be too concerned about it which is crazy making for me. I'm convinced that one or both of the drugs has something to do with it. My numbers are getting better and better although I've reduced my azathioprine from 100mg to 50 mg per day. I'm in a quandry as I get little help from the doctors.
Sorry you are getting a lot of pain. Although I have only been officially diagnosed a month and on the usual URSO and Pred (azathioprine) to be added soon, thinking back, I did have quite bad tendonitis about three years ago. I also have had a bad shoulder and thumb joint that did eventually just go away. SInce August this year I had a very painful shoulder with limited arm movement but my GP said it was nothing to do with AIH/PBC. However, it is really interesting that as soon as I started on my meds (20th Dec) the pain stopped/went away along with most of the dreaded itch! I can't believe they are not connected. I suspect the pred got rid of inflammation. Do you have a specialist GI or Heptologist who you can contact for some advice? I would probably do that.
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Liver pain?
Upper right abdomen pain, discomfort.
Frozen shoulder
Pain killers allowed with PBC
Still No Specialist
