I was first diagnosed with PBC about 6 years ago and put on Urso. I'd originally gone to the doctor asking for a health check because my ex partner had died of pancreatitis and our two daughters were left devastated and I realised then I had to be responsible and make sure I stayed healthy to stick around for them. I'm 61 now and they are in their 20s.
Had I been told my liver was damaged from too much wine over too long a period I wouldn't have been surprised but when I was told it was in good order (no scarring or fatty deposits) I was very relieved and determined to keep it that way by sensible drinking.
The diagnosis of PBC came completely unexpectedly and as I felt no symptoms I wasn't sure I believed in it but took the Urso anyway and had annual blood tests and visits to the consultant who was charming and reassuring.
Last year I moved home and am now seen by my GP rather than the hospital but coincidentally I have started feeling unwell in the last few months which is what led me to joining this forum.
I guess I hadn't really taken this illness seriously and it came as a bit of a shock to read everyone's questions and blogs and to realise how big a deal it can be!
Every time I had seen the consultant/doctor they always said if I started to feel itching or dreadfully tired I had to let them know immediately (I do get tired but still no itching, thankfully) but no-one had told me about the joint and muscle pain and that is what I'm experiencing now in bucket-loads.
It started with a pain in my right elbow which the chiropractor said was 'golf elbow' and then it spread to the tip of my left elbow, my left upper arm, all around my right elbow and up and down the length of my right arm. Both wrists are extremely weak. My lower back was in spasm for about 4 days late last year which made lying on it and walking almost impossible, then that went away of it's own accord and was replaced by a dull ache in my upper right back which I immediately imagined was my liver having enlarged and sitting there throbbing away.........
I went back to the doctor and she ordered more blood tests and a chest x ray (!) and asked if I wanted to be referred back to the consultant as this is beyond her area of expertise and I said 'yes please'.
I'm still waiting for the results of both tests and my hospital appointment but meantime on Monday my right leg started hurting all down the outside from hip to ankle making it really painful to walk and get up and downstairs. Again, as with my earlier back pain, I feel like I'm over the hump and the pain is diminishing and I'm beginning to move more freely. I guess I can cope with intermittent periods of pain if I know it's only temporary but frankly if it becomes a permanent feature I don't know what I'll do. Has anyone else experienced similar temporary flare ups?
Suddenly I feel frightened. It feels like my body is falling apart and all the years of taking my health for granted has suddenly made me realise how foolish I've been.
I'm so used to being active and love playing badminton and going on long daily walks with our dog. My husband and I are booked on our annual skiing holiday next month and in the summer like nothing more than jumping on the motor bike and heading off to the coast and now I'm worried this is the beginning of my body rebelling and telling me those days will soon be over.
I don't like this game anymore!