PBC Foundation

muscle and joint ache

I am finding that I am getting a lot of muscle and joint ache in my arms and hands. Sometimes the muscle ache actually becomes quite painfull and Im not quite sure what to do with my arms. They also go to sleep quite quickly, when im on the phone or sleeping with my arms up above my head. Also suffering with really dry eyes. Always had a bit of a problem with dry eyes but definately been getting a lot worse in the past six months. Not sure if all this has anything to do with the desease or its something completely seperate but on top of the exhaustion and depression it just seems like another pain in the arse to deal with!!!! I have a fear of going to the GP in case they just think I've become a hypercondriac! (not sure if I have spelt that correctly) Everyday I think that I will have a good nights sleep and everything will be better in the morning, If I do have a good morning, it seldom lasts long, then I feel totally defeated.... sorry about the tirade but there isnt anyone I can really talk too. x

12 Replies

Boy do I know how you feel, I have just been to my GP as I am sweating so much in bed at night I am waking up about 4 or 5 times soaked and freezing cold. As soon as i get in bed and try to relax everything stiffens up and hurts more than it does during the day. anyway I want a life so I went and demanded HRT and Valium, he said he would check how my liver was doing first but I told him I couldn't care less that I am not carrying on living like this, I also gave him all the what I call junk pills they keep giving to me back. I think he now knows I have just about had enough of this ruddy disease.


Empathise with you both totally. Even with tha HRT patches I still suffer from sweats. The pains in my muscles and joints are particularly bad just now even my hair and teeth ache. The doc doesnt know what do. Its indecisions like that which get you frustrated and demoralised. Luckily I have the hospital later this month so they may be able to help. If I let it I would feel depressed but as Ive said before life is for living and since I lost my two sisters, one who had pbc also, I am determined to live life to the full. You just dont know whats round the corner! Hope things get better for you both. :-)


Dry eyes are common with PBC but you can get artificial tears which help. I find the dry eye problem comes and goes. I have also had very painful parts of my body, the pain moved from one place to another and I can still see the bemused look on the face of my (very good) doctor when I tried to explain this problem! It too, doesn`t happen very often now but I know it will go in its own time.

I am 73 and have a very busy active life. The effects of PBC have been different thoughout the years for me but I do believe that stress makes the problem worse. Don`t let PBC defeat you, enjoy your good mornings and I hope as time goes by you will be able to enjoy the rest of the day.

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Hello rynick.

I don't think you are becoming an hypochondriac (I found myself not sure of the spelling at the beginning either, checked it).

I think PBC is a very odd thing indeed but like a lot of other conditions, certain things with it can lead to others as a knock-on effect as I call it.

The only problem I have with PBC is night time itching like a lot of others on this site. I don't tend to suffer from fatigue, mine goes down as being tired later in the day due to not much sleep through the previous night.

I do have a tender left thumb base where the fleshy part is, noticed this about a year ago. I don't get any problem with it unless I grip or grab something a certain way as it feels quite stiff. I think mine is down to wear and teat (had manual and domestic jobs over the years). I do often have an achy right shoulder and the year prior to diagnose of PBC (diagnosed Dec 2010) I did thinkI had injured my shoulder at work but now I am sure it is due to PBC. It comes and goes but it is of no significance to me as yet.

Now I did have a Vit D check back in 2010 and another 2011 and my 2010 one was not too bad and I didn't require supplements. I did utilise the sun more during 2011 (though never a sunbather) and I did have adequate levels. Might be worth having a Vit D check as we need for the bones.

There is something called Sjorgens Syndrome that apparently you can also aquire, especially with PBC it seems from others on the site. This causes a dry mouth and dry eyes.

Now apparently quinine that is found in Tonic Water is supposed to be good for pins and needles so maybe that could be worth a try to see if you could perhaps alleviate the problem. A retired lady I used to know used to have some at night she said as her legs used to 'go to sleep' as she said and then she'd suffer pins and needles. I have bought natural tonic water in the supermarket when it was the festive season for myself.

Have you at all got a PBC Foundation GP leaflet from them so you could perhaps take one in for the GP to read? There is mention of dry eyes for instance on that. If you are seeing a hospital consultant at intervals might be worth mentioning to he/she as he/she is supposed to have more expertise in this area than a GP.

I think at times we will all get down with having PBC and associated problems/irritations that can come with it and it isn't easy but we have to hang in there and make the best of the good days. I'm sure that sharing your current gripes that we all encounter now is one way of knowing you are not alone out there.

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About 4 years ago I was having aches and pains with the perimenopause, and also had increasingly more frequent and painful periods. A mirena coil did away with the periods and, eventually much of the joint/muscle pain too.

When I began having hot flushes, just over 2 years ago, they were keeping me awake, until the sleeplessness began to cause stress neck aches, and eventually migraines. When I eventually saw my GP she was great. She suggested I have tiny doses of amitryptiline. This was originally produced as an antidepressant, with doses starting at 40mg and then, up, up. However, it is now rarely used as anitdep, but mainly in much smaller doses for fibromyalgia, migraine and insomnia, and I find it helps me sleep through most of the flushes. I take about 1/4 or 1/3 of a 10mg tablet in the evening, after a meal, and sleep like a baby. At such a low dose, I can stop and start it, so I only use it when I have the flushes, which seem to come in bouts of several months. A physio says it's addictive, but I've had no trouble stopping for months - although maybe if your sweats and insomnia are worse you would need more, and it might seem more dubious ... but to me it seems preferable to valium??

Finally, if I manage to exercise, do yoga and walk (and get out and have fun) then everything is much better. Once I'd got the sweats and insomnia under control, I began going to the gym (cheap, local authority), and my instructor worked out a gentle programme of exercises, mild weights, and aerobic stuff, which was all aimed at improving my general all round fitness, and strengthening me across all joints, as I'd lost muscle tone and my posture was slipping a bit, plus making me susceptible to wrist, hip, and knee ache if I did too much gardening, or typing. If I go to the gym regularly all aches go away, I'm stroger and go up hills better, and I've even noticed that I can do things in yoga that I did not used to have the strength for.

It's hard work keeping all this up, and my PBC diagnosis is debatable (I don't have bad lfts or any symptoms) so it's maybe easier for me, but I do recommend giving some of it a go, or atleast talk to your GP. I know if I stop the gym work - as in the last few months, after long bad cold/flu, and too much other stuff going on - all the aches and pains creep back. Good luck!!

PS good diet too, low fat and gluten, and lots of fruit, veg and salad!

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muscle and joint aches and pains are one of my biggest problems on a day by day basis. The pain can be so bad I cant sleep, walk etc My rheumatologist put me on Plaquenil which has helped a lot and made me less dependent on painkillers. Don't sweat anymore and have dry eyes. Get some artificial tears from your doc they do help.


I take the same med and it helps me a bit too.


I suggest speaking to your doctor about Sjogren's Syndrome. I have that along with my PBC, Fibromyalgia and Raynaud's. Sjogren's is associated with the joint pain and the dry eyes/mouth.


I have very much the same problems and have been told by my doctor that they are all part and parcel of our illness,I have found that taking paracetamol at night a half-hour before going to bed helps with the aches and pains in a mild way ( my doctor won`t prescribe me pain killers because it all affects the Liver and he`s trying to lower my meds insread of raising them) yet he allows me the paracetamol, as far as the eyes go he can only recommend eye drops, I had to see an optician to see which drops were best for me, DON`T just buy any as some will irritate the condition I hope you start feeling better soon.


I can feel your pain also, I ache from head to toe especially after a day at work, which I have had today. I got home took panadol made tea and went and lay on the bed to try and relieve the pressure on my legs and hips. It must have been a week of telling the doctors how fed up we are! I told my husband to not even bother coming to my appointment this week as it's just the same old conversation that we had 4 weeks ago. I understand they are not miracle workers, but my Professor of the transplant team won't even give me pain relief! I become beside myself in pain sometimes.

All we can do is as much as we can when we can and try to take care of our health, soldier on and make the best of this horrid situation we are all in.

Strength in numbers is all we have.

Cheers everyone.


So glad to read all these posts, im only recently diagnosed after dentist sent me to hospital with dr mouth ( gp said it was stress) I was diagnosed with pbc and also told i may have Sjorgens Syndrome, tho my eyes are ok. Had muscle pain for ages, particularly in buttocks, but it does move about, back ache at the weekend, pan in arms and hands today but like others i do my best to get on with it, but regulary hit by fatigue, but great to hear people not letting it beat you :)


Rynick, I have just read your post and it could have been written by me, I shadow every statement you have made, every day seems to bring on a new problem. I was really fed up last week with it all,guess we have to battle on and think we are lucky as there are so many others who suffer more. Can't think what is around the next corner try and stay positive but some days it's a loosing battle. Thank goodness for a good GP and consultant


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