At the time I was diagnosed withh PBC over twenty yeaes ago, I also was diagnosied with FM although I never felt I had it..this diagnosis has gone on on for years. Knee pain, lower back., sometimes by face would hurt and tingle and I couldnt touch my hair..this I thought was nerve pain. I also felt tired after exercise and still do and cant sit well in the cinema or peoples houses with low back chairs for example and need a soft bed.
Does this seem familar as part of PBC? I am now on urso but it is quite late and my lfts are pretty raised and my liver was marked as 12.5 on the fibroscan.....,,but my back is somewhat better now I have given up gluten.
When members of this site day they have bone pain..what is that exactly please?.
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bobbycat
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Hi bobycat, I too was diagnosed with fibromyalgia at the same time. I have always been dubious about it as although fibromyalgia is very individual there is an underlying pattern that I don't seem to follow. As time has gone on it seems my pain is down to a deficiency in vitamin D, since going on it things have improved, fatigue which fybro' s get too, & they've just diagnosed a soft spine via a dexa scan. I also have a family inherited muscular dystrophy problem which they can't quite pin down but there are 3 of us with it. So it looks like the fybro' diagnosis was actually wrong. When they did the pressure point test they pressed on my knees & I broke down in pain & tears so it was instantly diagnosed I had just had two knee replacements!!! So I've put my fybro' diagnosis to the back of the cupboard for now. Your pain sounds familiar to me. Sometimes deep in my muscles & joints. Do you have head sweats. That is also indicative of low vitamin D? X
I was dx with fibromyalgia a couple of years ago after thinking the pain was due to PBC, like you I wonder about this dx sometimes. I was given the dx by the rhumatoligist after he tested what they call trigger points over the body and I nearly fell to the floor when he applied light pressure to the ones down the spine.
However I am not convinced it's FM either, the pain I have is not confined to the joints it's the bone, tendons and the muscles stiffen, and is worse when I sit or lay down. I start to feel the pain in any part of the body that is in contact with the chair or mattress and it takes a lot of effort to move position so I'am a bit of a fidget these days.
If I'am going about my daily business I manage really well with the pains that come and go throughout the day, it's those at rest that seem worse, which also causes sleep problems where I am not getting restorative sleep so it seems like a viscous circle and the rhumatoligist could only offer amytriptline to help me sleep which I refused to take.
I used to love having a nice relaxing bath just before bed, but I can't do that anymore as I don't have the strength to get up out of the bath, so my strength seems to be affected I am only 62 and feel I shoud still be able to have a bath , but the GP just brushes it aside as normal. But his answer to the pain and fatigue was to have an afternoon nap for an hour........
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Except for the fibromyalgia diagnosis you are describing my life.
When I told my GP about the joint/muscle and bone pain he immediately referred me to a Rhumatoligist, who after two years of tests etc. could only suggest that all my presenting symptoms were PBC related. The recommended pain killer, Paracetamol-Osteo, doesn't even touch the surface. I am Stage 4 so I am limited as to what drugs I can take. ;-(
How's the "afternoon nap for an hour" working for you? My day pretty much finishes around 1 pm - due to my afternoon nap I remain 'groggy' for the rest of the day.
As for the "weakness", that came as a complete surprise to me. I had no idea that I was so weak until a couple of years ago when I tried playing hop-scotch with my grandchildren - I literally could not hop, I could not launch myself off the ground. Despite muscle strengthening exercises, I can no longer ride a bike (can't get my leg over the bar of a girl's bike), get myself up off the floor without some sort of assistance, and, horrors of horrors, out of a bath unaided.
I don't think any of my pain or weakness has anything to do with my Vitamin D levels, as they are well within the 'normal' range (I take Caltrate + Vit. D for my osteoporosis), plus I live in Australia so get plenty of sunlight.
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As you know, no amount of sleep resolves the fatigue so I couldn't beleive the Gp actually thought it would , the fatigue I have is not a sleepiness.
The Gastro sent me to rhumatology as she insists that my fatigue and bone pain is not PBC related, so I have to wonder if anyone actually knows what us going on , she goes by blood test and scan results and mine are borderline whatever that means.
I did have very low vitD though and it's helped a little but the weakness is both a worry and annoying that I can't do all the things I want to do with my grand children all our activities are now based sitting at the table. It was not being able to get out of the bath that hit home the hardest.
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Are you your GP's only PBC patient? I know I am (with my doctor), simply by the way his eyes glaze over any time I mention something related to PBC. I realise that GP's can't be expected to know everything about every illness/condition, particularly the rarer ones, but gee it's a bit disconcerting when they offer advise, that we know as the patient, will not work. I was told the afternoon 'nap' would be beneficial too. I'm still waiting for the benefits......
DianneS I agree with you. It is such a helpless feeling when the dr tells you something and you know this is not going to work for this body. Nobody knows your body as well as yourself. All we ask for is help,and hey do we battle . This autoimmune is just not going to stop,as it attacks the one after the other body part or organ. For me the itching part is the worst with the PBC I have to be so careful what I eat, My liver enzyme counts came down since the last test, but know I have hyperthyroid whereas I always had under active one. Crazy how our bodies work,and then the GP wanted me to double my Eltroxin intake. Luckily I went to another doctor, just to make sure, as I was not happy with this,and she said under no circumstances , we must lessen the dose. Anyway, at least we know we are not alone.This site has been a great help for me. Best of luck
Ah, the 'Liver Function Test' results! As Candy12 says, these play a big part in our doctors' (both GP and specialist) assessment of our symptoms. and progression. By going on the enzyme levels (indicated by the LFTs) and dismissing the patients' symptoms, doctors inadvertently 'mess' with the patients head (i.e. we begin to doubt ourselves - well I did anyway).
In my case, my GI specialist kept telling me, the sudden onset of my new (to me) symptoms were either not PBC related, or were nothing to worry about, because my LFTs were 'stable' and had been improving over the last year or so. Well, not happy with that explanation I changed to a new doctor who listened and ordered an ultrasound which showed I had moved into cirrhosis stage, with portal hypertension, enlarged spleen (so low platelets), and a subsequent endoscopy showed varicies - and wonders of wonders, my LFTs are still improving, go figure.
TFor me, the best thing that came out of all that was to find that I'm not crazy and that I (and every patient) should listen to my body, because it isn't crazy.......
My pain varies, but in addition to the PBC and FM, I also have Sjogren's. I have kind of learned to tell what is a Sjogren's flare and what is a flare by one of the others. When even my skin and hair hurts, I know it's FM. I get fatigued with pretty much anything, but I just push through it and after work I go home and cook and do anything else that is needed before I sit down; if I sit down, I am done for the night!
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