So many nagging symtoms and so much lonliness, but thanks to this site some help with all your support and blogs :)

Knowing these feelings I am having are the same as so many other people does help. I was told 2 months ago still feel shocked. I have spent most of today reading this site ,still feel quite depressed but a little less lonely. I have Rheumatoid arthritis, hiatus hernia, bronchiectsis and now PBC. I was getting so confused as what pain symtoms were from what ailment, sore achy hand, chest pains, very sore stomach,bloated,pains in my arms,achy and slightly swollen legs and complete exhaustion. Reading these blogs has made me realise that most can/may be PBC, so I do need to really talk to my consultant, and get more answers and not brush off..I am not due to see him till June, but I think I will ring and try and bring the appointment forward. i have a brilliant lung Dr so will ask her when I see he next week to help . I still feel a fraud, that people think "here she goes again" my health history has made me feel that no one really cares!! My family try but only see me dragging myself around doing the domestics or lying down,, no more ranting and thanks for listening to who ever reads this, it felt good to write. :)

12 Replies

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  • We all need to have a rant and have a listening ear, so good we have this site and other support outlets. Rant away, it always feels good once you have shared with someone. Also, once you have got a good support network around you, that in iteself will make you feel better. The foundation runs workshops on PMA (positive mental attitude). Looking at things in a positive light works for me. I also changed my diet and have found that too many carbohydrates in a day bloats me and makes me very tired. Too many fats will give me horrendous pain down my left hand side. Different things work for us all, I am sure people will share their own experiences with you.

  • Should have said down my right hand side not left. lol,

  • Hi Obviously I dont know your situation but I had a bronchiectasis and in the end I had surgery to remove it - big operation but with fantastic results. Just thought Id let you know, you can always discuss with your resp. consultant.

    Hope you feel better able to cope soon - it is still early days.

    Take care

  • Thanks for the input. I see my consultant next week so will mention it. I have had 2 lots of antibiotics this year already, so it is causing problems. I do find it hard to separate the symptoms though with PBC. Breathing problems, chest pains, and total exhaustion.Mornings are the worst, coughing up so much yuck! Actually find some days I get to the point I can hardly move my legs to walk.. Thanks again, hope to talk soon X

  • Meant to ask, now you have had the op for bronchiectasis are you "cured".

    You said it was well worth it, can I assume you feel so much better?

    How do you cope with your PBC?

    Thansk again you have got me thinking? Cheersx

  • Im cured of the bronchiectasis - which was a huge relief. Free from all those chest infections etc. My PBC symptoms are quite bad and no change to those Im afraid, other than less strain on my liver.

    You are the only other person I know of besides me that have/had a bronchiectasis and I have always wondered whether the two where connected as both started at around the same time - that seems to be a question no one can answer.

    Unfortuately I suffer with bad arthritis since getting PBC, just been diagnosed with Inflammatory Osteoarthritis and that bothers me alot more than the PBC at the moment.

    Break it down into bite size pieces and then its a bit easier to cope with.

  • I too, was diagnosed 2 months ago, Dec.19, 2012. I have all the same feelings as you. I have NO symptons, & felt wonderful, until I found this out. So, after educating myself on PBC, by reading everything I can find, like everyday....for the past 2 months, I have made a vow to myself to....."Fuhgeddaaboutit," & carry on, for now.

  • Sounds like a good attitude, I am going to get to the bottom of some of my symptoms, most stomach pain and nausea,exhaustion then i will try to take a leaf out of your book,

    cheers :)

  • Hi just read your reply I was diagnosed on friday just last week still in shock. I love your attitude so am going to adopt that lol. As I had a good day until I got home from work sat snd cried but then read your post made me feel alot better. Thank you wendymarie xx

  • Dear lady, hang in sweet, it is a real hit in the face, but we can help, I feel so much better just in the few days I have been on this site. Come home to a lovely hot bath, relax, then get on with the evening chores?? Be kind to your self first xx

  • Have you been tested for sarcoidosis? I have just had several C.T. scans, ultra sond scans, xrays blood and urine tests and am awaiting the results. It is the multiple autoimmune illnesses that makes things so confusing as they all have similar symptoms. I have only seen the consultant twice and he is trying to sort out the main cause of my feeling so poorly. Is it the M.E. Sjogrens, or PBC which I was diagnosed with years ago or is it sarcoidosis.

    It is very difficult to keep positive but my g.p. told me to stop asking why can't I do this or that and to say to myself " I am amazing in doing what I do do." Sounds silly but this made me feel much better and now I pat myself on the back for washing a few dishes or walking around the block. Hang on in there. We understand where you are coming from. I send you some sunshine from our beautiful Island to cheer you up. God Bless

  • Sometimes writing your thoughts and feelings down really helps to clear your head, it certainly does with me. I find it very difficult to express my feelings verbally and have found that writing them down works for me. Do what feels right for you just don't bottle it up.

    Best wishes

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