Bone/muscle pain

[Pamela4475]

Some days it feels like bones are just breaking from normal activities.... of course they are not but some days are good with no pain and then other days it’s all I can do to finish my chores..... anybody else?

[4pjx__]

I have had some bone pain from time to time. Sometimes, when I am walking, I have a pain behind my knee cap. Sometimes it's the right knee, other times it can be the left. I have had terrible achy legs after a hard days work. I sometimes have achy elbow joints or ankles. I started taking vitamin D about 6 months ago and it seems to help. Not too sure if my issues are the same as yours.

Pam

[Pamela4475 in reply to 4pjx__]

Vit d helped for awhile but now seems worse 😐 I hope you don’t have that happen

[4pjx__ in reply to Pamela4475]

Somebody on another thread said she does Epsom salts baths. Maybe that would help?

[Pamela4475 in reply to 4pjx__]

Worth a try

[Lisa15]

Hi Pamela

I know what you are talking about. I have constant bone pain with more bad days then good. It does feel like they are breaking. They even hurt to touch. I also have osteoarthritis and my rheumatologist thinks it’s a combination of that and PBC. I soak in epsome salt which helps while I’m soaking. I’ve tried a heating pad it helps a little bit. I also take vitamin D.

I hope you feel better soon.

[Pamela4475 in reply to Lisa15]

Ty and will try that

[Hidden]

i feel for u i was at QE in brum on tuesday with liver nurse we were having this discussion because i have fibromyalgia my symptons overlap she z coz ive got 2auto immunes goin on it would be very hard to differ but i know your pain i only take paracetamol it takes the edge off and does nt have the side effects of some of stronger drugs hope u find something to relieve yours and don t beat yourself up over not being able to do things if it cant be done on a certain day then so be it hsework will allwaysbe therr unfortunately x

[Biddyb in reply to Hidden]

Hi have you tried Tai Chi for your fibromyalgia it is supposed to help. Good luck

[Hidden in reply to Biddyb]

no but thank you x

[Pamela4475 in reply to Biddyb]

Thank you

[Pamela4475 in reply to Hidden]

They were thinking I might have fibromyalgia too

[Lovelys2 in reply to Hidden]

Hi pattie newly dignoised 2 months ago pbc,im still learning what i can about it,alot to take in,i to have fibro,its awful just over a year now,sum days i cant even talk propley,so very forgetful it really upsets me,good&bad days like everyone else,any feedback on pbc to make me understand a little better would truely help.thank you.

[Hidden in reply to Lovelys2]

hi im not that clued up on pbc i know it causes the fatigue the pain and i do seem to have a prob eating anything greasy i have been on urso for 5yrs accord to bloods it has it under control if u have not already at some point u will get a fibro scan this is liver related not fibro in our case lol and a bone scan and normal ultrasounds well this is what i have been told and had so don t be shocked if they ask for these oh and the usual bloods good luck i am however learning on the job with fibro but feel i know a fair bit on that lol

[Lovelys2 in reply to Hidden]

Yeah ive had the fibro scan,loads of bloods taken,and have to go for a bone scan in may,yeah im on urso,so wont no for another 3 months till my next appointment if its helping,fibros awful wouldnt wish it on my worst enemy,but just learn to pace yourself,easier said than done thow,hope your well take care thanks again for your replyx

[Hidden in reply to Lovelys2]

fingets crossed for u yes fibro stinks i wake up after 20mins of sleep continually during night and the minute u open your eyes thwres something else hurting

[butterflyEi]

Hi Pamela4475

I can truly empathise with this. I started spring cleaning last week, well forced into it as I seem to have moths in the the house so the spring cleaning has been very intensive the lounge was not to bad but the kitchen has floored me - no pun intended!

I think paracetamol is helpful and is one of the pain killers allowed for those with PBC but for something else I am prescribed gabapentine so I think the edge is taken off the discomfort by these tablets.

I appreciate that regular exercise is recommended by various agencies but sometimes it is harder than others.

best wishe

[Lovelys2 in reply to butterflyEi]

I take pregablin helps a little,i totally feel exhausted&drained my whole body hurts,i feel my bones are going to snap sum days,even thow i no they wont,does pbc cause this to?waiting on a bone scan,refered by my liver specalist,im still trying to come to terns with it all,is it normal to feel bloated?and uncomfortable where my liver is?thank you.

[butterflyEi in reply to Lovelys2]

I often feel bloated but rarely have discomfort around the liver but I have read many do on here and other sites.

[Yankeerose3]

I have been getting pain in my joints/muscle. It hurts so bad that I've gotten cortisone shots. First my elbow horrible pain and then another one in my left hip.... Getting the shots have worked great. It saves me from having to take pain pills but I do have days that I just hurt all over.

[lovetocreate]

I have episodes where it feels like all of my bones/muscles hurt terribly. It seems to happen when the weather changes. Cold is NOT my friend anymore. And I used to be hot all the time!! It’s crazy.

I do hot epsom salt baths. Also visit my massage therapist & that helps a lot.

Don’t take anything for pain as I hate meds. Just push through!

[Pamela4475 in reply to lovetocreate]

I don’t like pain meds either

[LorraineLouise]

Yoga has helped me greatly with this kind of pain.

[Pamela4475 in reply to LorraineLouise]

Will also try that

[Gioielli]

I suffered from severe pain in my shoulder and upper arms and occasionally other muscles. I was given cortisone injections in my upper arms last November and the pain relief was incredible. Unfortunately, it only lasted a couple of months and is now back with avengence! I am concerned it may be fibromyalgia but my consultant said that even if it was I could only take paracetamol. However, I would like a diagnosis so will be seeking some medical opinion. On the bright side the Ocaliva is giving me no side effects, so hopefully my blood tests will also show an improvement.

[Hidden in reply to Gioielli]

they are now classing fibro as a autoimune according to. my liver nurse i also have psoriatric arthr and tried the jt jabs but was alletgic to them so its just paracetamol fibro has no pacific test just more a process of elimination and symptons ive had it 3/4 yrs you need to see a rheumatologist im like u on thay one i need a name even if nothing can be done stops your mind from working overtime well in my case good luck with everything x

[Pamela4475 in reply to Hidden]

Exactly

[Pamela4475 in reply to Gioielli]

I hope so

[My-life]

Yes I do.

[BethRL]

Hi

I have had joint pain. I also 10 yrs ago had a hip replacement. I was DX 2 1/2 mos ago. I had neuropathy in feet and pain in legs.

I had my vitamin levels checked at time of liver panel taken. Vitamin D deficient. In addition folic acid. Slight low B.

I now take multi, calcium n D3 and folic acid and a B12. I am fine now.

Of course Urso.

I am at a mild level 1. My liver enzymes are decreasing as well.

I have always been physically fit. Movement is best as per Arthritis foundation.

In addition I read with PBC ADEK are affected. Plus fats are not digested well.

Maybe checking your vitamin levels might help.

Feel better. 😊