Joint and body aches

[tama]

I am stag 4 cirrhosis pbc,I have started hurting really bad in my joints all over,is this common with pbc,I have had it for about 2-3 years that I know of, was wondering if I could be low on vitamin D

[Tigger858]

Hi tama, joint pain was my first symptom of PBC. The pain in my hips was so bad it would wake me during the night. I tried a variety of painkillers, which didn't help, and I was referred for a bone scan which, thankfully, was clear. I have gained weight and struggled to lose it since I was diagnosed, however I have noticed that when I stop eating certain foods the joint pain almost disappears. I have now stopped eating normal bakery products, biscuits, chocolate etc. and started to use gluten free products. I don't know if it's related but I do feel better. My next consultant appointment is later this week and I will ask if there is any connection. It's all trial and error for me but anything which eases the pain is worth trying. Take care

[teddybear7]

I suffer really bad they've just checked m vit D it's really low they've just started me on a tablet but think it might need injections. Just ask them to check xxx

[butterflyEi]

Hi Tama

I also have pain in the body. For me initially I put it down to the ageing process. I have sent away for a Vit D testing kit following some advice from my lovely step-daughter. (Our surgery has a taped message saying they are experiencing high demand so are dealing with urgent calls). If the test comes back a showing a need for Vit D she has suggested Vit K as well.

When I have some news of my progress I will report back.

best wishes

[kalyhan]

My doctor advised that inflammation often goes along with many auto immune issues. For some, they often have Rhumatoid Arthritis and they can look for certain markers in blood tests. In any event, avoiding certain foods can certainly help.

[dollydaydreams]

My Gastro does not believe anything is connected to PBC, dry skin, itching, pain, hair loss according to him it is all something else, I was sent to rheumatology about the pain and she told him she agreed with me that it is PBC related, i have a copy of the letter she sent to him from my GP but he will still not accept the fact, I have recently discovered I am the only person he see's with it ( tiny cottage hospital ) will soon ask to be referred to someone else at another hospital who's name i have been given by someone from the foundation, so fingers crossed please, I take calcium and vit D as i have " severe established osteoporosis" as well and an old fracture in my spine that gives out every so often. I need completely replacing with a newer model :o)).

[tama]

I have no vitamin d in my body at one time if wouldn't even show up on blood work, I see a specialist in dallas for my pbc and I to feel like they think nothing is related to my pbc,like being tired, it's very frustrating and she is suppose to be one of the best but I want to find someone else

[Hidden]

Hi Tama,

I was diagnosed 27 years ago (approx. Stage 2), about 6 years ago I began aching in all joints, bones and muscles, my GI specialist said not PBC related. Like Dollydaydreams, I was sent to a Rheumatologist, who after many negative tests also agreed with me that my issues were PBC related. Not feeling satisfied with my GI's response to the Rheumatologist's findings I changed to a Hep. specialist who accepted the fact that the pain etc. was related - he sent me for an ultrasound and fibroscan, both of which showed I had advanced cirrhosis.

Now to answer your question: Yes, joint/bone/muscle pain is common in PBC, see the Mayo Clinic's site - symptoms:

<mayoclinic.org/diseases-con...

With your other query, I am unsure if low Vit. D will cause the pain, because my Vit. D and K have always been 'normal'.

Hope this helps

Di

[Twinkle26 in reply to Hidden]

Thank you for the website info, it gives loads of important information and a lot of bells ring too when you read something that you then think, I didn't know that was because of etc. So thanks again

[cazer]

Hi was told that as a symptom of pbc we do not absorb the fat soluble vitamins..a e d and k so obviously that can cause some probs.have you had your calcium checked.i had a scan which some thinning of my bones but with vit d and calcium and bone thickeners im back within normal levels.i was also told years ago that most autoimmune diseases have the same sort of symptoms such as fatigue joint pain etc.my joints are always much worse in the damp although i dont have arthritus..i think its all part and parcel of pbc but i would ask them to check yourvit calcium etc.

Just be aware if you choose to go down the gluten free diet and then you want to be tested you will need to eat gluten for 3months otherwise you it wont show up

Good luck hope some of info help.cazer