Unexpected aches and pains

[Wingding]

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!

[Oidra]

I can remember going to my doctor a few years ago and trying to explain to him that I had this awful pain that moved around to different areas of my body. It sounded so stupid and there seemed to be nothing he could suggest. However all that stopped (thankfully) and nothing as painful has happened for a few years.

Oidra

[Yankeerose3 in reply to Oidra]

I agree about it sounding crazy and the Dr's act like it can't be caused by pbc but as you see I'm not alone in having the same side effects.

[Junolee]

I think you should continue doing what you are doing until you can't and then find something to replace all that :). The Docs will sort everything else out. Stay cool and positive x

[Magnolia]

I lot of women have Fibromyalgia along with the PBC which causes pain all over your body. Some people and my pain clinic dr. thinks that the ursodiol causes some joint pain.

Magnolia

[wendyh]

joint & muscle pain along with the tiredness was the reasons i went to the GP in the first place.

the anemia took 2 years to be sorted and nothing had improved so went back to GP, it was then that i was sent to the Gastro consultant an diagnosed with PBC and started taking URSO. still have all the above but LFT's have improved.

[LStonelli]

I had the joint pain and different pains all over my body. It 's been about a month now I feel like my old self since I went off the generic Urso and started the original. I was dx in 2010 and have heard the fillers in some generics can cause different side effects....well that was the case with me...I make sure I take my 500mg. after breakfast.....my vitamins after lunch and the next 500mg. after dinner. It's been working for me and hopefully it will help someone else. Good luck to all!

Laura......any questions you can e-mail me @ [e-mail]

[Maggs3petts]

I also have fibromyalgia + arthritis, raynauds, scleroderma, asthma, depression, migraine, and sciatica. At the min I'm experiencing nose bleeds and I have some lumps on my neck which are very sore. My Rheumatologist is very thorough and when I was with her on Thursday she arranged for more bllods and sent me for a chest xray. She wants to see me in 8wks unless anything shows in the blood tests/xray in which case she'll call me. I'm trying to keep positive but its very difficult at times. Has anyone else experienced a psorias-like problem. Its more so than itchy. I'd be glad to hear from anypne on this or any other PBC-related issues. Best regards, M

[Yankeerose3]

I am experiencing joint pain that started in my right elbow then right shoulder and now slightly on my left elbow. Even my left hip and upper leg hurts when I first get up.... I, too, am on urso. Had biopsy 2013 confirming pbc and fatty liver. The urso brought numbers down to normal but now having joint pain, itching and fatigue. Probably sleep apnea