Pain and loss of strength

Wonder if anyone else suffers from pain especially in legs and feet and general loss of strength?could it really be down to pbc?been to see a rheumatologist and altho my bloods show raised inflammatory markers says it's nothing to be concerned about.felt like saying he could have the damn pain then.just been out trying to garden and struggling to push the mower.ive always been exceptionally strong-I even worked in a gym in my youth.feel like I've eaten kryptonite!i don't have the usual symptoms of pbc eg..itch bloods are only mildly elevated ggt 80at worst was 120.i only take 450 mg of urso as more upsets my system(should be on 1000)

Can this be down to pbc or am I just getting old?im 55 and went through change as I was diagnosed pbc in jan2013

27 Replies

  • Hi

    I have the same symptoms pain in my legs especially at nite, I also find I am a lot weaker than I was and only seems to be more recently. I am at stage 3 of pbc and only 2years ago was not even stage 1. I am progressing faster than I thought I would have. Maybe that has something to do with the weakness.

  • Hello cazz22.

    Have read others mention similar to what you have asked on here previously.

    Not sure myself. I experienced the fatigue associated with PBC back in 2010 the year I was diagnosed aged 46 with PBC. The fatigue left me at some point the following year. Still got the itch, reason I went to see a GP in the first place and was then diagnosed with PBC. I've not experienced any pain as such as yet, I get tired later day though due to broken sleep at night because of the itch.

    Could be that at the moment you are perhaps starting to feel a bit of both combined, ageing and the PBC.

    Apparently fatigue and also the itch are of no reflection on the bloods so you will find that we all can have varying blood results and some encounter fatigue, others the itch. I feel for the ones who have both symptons as I remember in 2010, not nice at all. The only 'bonus' if you can call it that during 2010 and being fatigued was that I slept better at night even when the itch was much worse than it has been a couple years of taking urso. Now I dont' tend to experience the itch during the day, occasionally get prickles that are the start at night but it seems confined to night for me at present.

    I'm not a doctor and it seems that urso doses can vary too. I was prescribed 10mgs per kg body weight by the hospital consultant Dec 2010. I take 600mgs altho' I have dropped several more pounds (probably due to fidgeting about mostly at night with itching, burn more energy) so I reckon I roughly take around 12mgs per kg body weight due to it.

  • Sorry to hear you struggling, it takes a long time to get your head round PBC ! I was diagnosed in 1995 and I am now 63 and have had the same symptoms as you for years, some day's or should I say night's are worse than other's, no ryme or reason to it. I hope this helps you a little.

  • I too have severe pain in my feet and legs - in the last few months it is diffucult to walk. I too don't know which condition is causing it - is it PBC or is it one of the other autoimmune conditions I have. All I know it is difficult to sleep - have lost lots of strength. In the last 2 weeks I have resorted to ibuprofen everyday as the pain is intolerable. I know that pain killers are really a no no with PBC - but survival tactics are required,

    I find the pain moves around my feet - which is strange. Would love to know what is causing it!

  • Hi cazz22

    I am now 63 and was diagnosed some 10 years ago. Recently had my bloods done and best answer that I could extract from the GP was that the numbers were all good with the exception of bone density. I did not find the answer that helpful but they are so busy and constrained by time.

    Yes, I have noticed a huge loss of strength however because I am on a statin I have put it down to that. I had always been a hard worker with a strong back, never afraid to muck in with any jobs needing to be done. Nowadays I struggle to turn my mattress. My feet tingle rather than being painful this discomfort varies from just the feet to up my legs. Something that cannot be helped so I put up with it.

    The recommended dose for Urso per kilo (I think) is printed on the leaflet. I put on weight so now take 1000 split 2 in the morning and 2 at night but I also take ranatidine. I read on here someone had been recommended it for the itch and as I was on Omeprazole which was not doing much good a change to ranatidine one twice a day has settled my indegestion problems quite nicely. I was taking a one a day antihistamine but the itch got so bad last year that I now take 3 or 4 a day depending on the itch of the drowsy type of anti histamine that can be taken more times a day. I also now, again gleaned from another contributor, use doublebase gel to keep the skin from drying out.

    I know how cross I was with the loss of strength in my hands and at 55 you are bound to want to be more active so I sympathise with your frustration, hopefully you will have levelled off now and will be able to adjust. Coming to terms with the various synptoms PBC throws at us is amchallenge

    best wishes

  • Hi Butterfly just read ur post. I have had the awful itch since yr b4 I was diagnosed with PBC back in 2002. Anti histamines never worked 4 me so just out of curiosity wonder what one u take. Also read about the ZANTAC being good for the itch recently on here did it help with your itch?

  • I got more or less the same as you from the rheumatologist, he said he could actually feel the inflammation in my feet and ankles, he did not bother to add this into my medical records though instead he put that I had lost 7 1/2 stone by my own choice ( another lie) and that was why I had lost strength in my muscles, it was a load of rubbish, i lost all the weight because of PBC and lost a load of muscle because of it too, I also get a pain up my shin at times. and almost always have it in my calves

    At times my feel and ankles have been that bad that it hurts to even put them on the floor.

    I started to get ill at just before 55 so believe me you are not old because I did not regard my self as old i was as fit as a fiddle.

  • Thank you all for your replies.i was begining to think it couldn't be pbc as I don't itch or have fatigue-thank goodness.i really feel for those of you who have.the pain is just so wearing though and as butterfly said its sooo frustrating not to be the 'super woman I was even a few months having to ask my family and friends to lift things etc.i work full time but if I'm stood all day(work in a primary school covering classes for teachers) I don't know where to put myself for pain that evening or the next day.i feel I have not a lot of quality life and tho I can't afford it am considering asking for less hours

    Again thank you for replies.i feel that yet again you people have userped the medics and pain and weakness IS pbc related.roll on to something that can improve or cure it all for us pretty soon

  • I have the same symptoms and like you was very sporty before, a racing cyclist. I have always been very strong and worked on the land all my life. Now i am a wimp! I have trouble holding a large frying pan. I can still ride a bike but not very far. If I don't respect my limitations I get dizzy and feel like a have the flu. I am very weak on the wrist and arms. Pain in heels and ankles and my muscles seize up if I walk more than 3-4 miles. I for my self totally dispute that it is to do with my age, yes a bit of aches and pains but I am only 53 and all these problems came all at once, 8 months prior to being diagnosed. My specialist said that it was part of pbc. All my bloods are in the normal range.

  • Iowcaro,you have just described me!i went to a specialist last year for pains in my heel and lower leg which prevented me from riding my bike.they gave me physio!had to sell bike.what breaks my heart and I mean really breaks my heart is the thought that I won't be able to have any more dogs (my passion is walking /dogs) after my old present guy has gone.he 13 1/2 and probably able to walk further than me.its the only thing with this damn pbc that's reduced me to tears

  • Are world becomes smaller with pbc. I try and find things that still give me pleasure. Don't laugh but i now do cross stitch. I like to garden, well grow vegetables, luckily I have a rotavator. I think sometimes what makes it harder is that other people view us as being pathetic. My labrador is 10 years now and I don't know if I will get another after he has gone, I couldn't imagine being to cope with a young dog.

  • I do creative things iowcaro but my passion my zest for life is dogs.i too know a pup would be out of the question but for me a dog less future offers me no quality of my cross and angry that my body is not responding like it should.ive never been a jealous person but find myself listening to other 55 year olds who are living life again(not that I want to do the same) but feel envious

  • I can ease the thinking on the age question. I am only 34 but unfortunately have stage 4 for some reason it has progressed extremely fast. I also have the pains in my legs and feet but tend to have them in my arms and wrists also. The Zantac/Rantinidine works wonders for my acid reflux but does nothing for my itch lol wish it did. I have lost all my muscle strength. I was a x-ray tech in a small hospital but had to come out of work due to the fact I couldn't pull on the patients anymore or stay awake for a whole shift. I also will get the numbness and tingling in my toes and fingers which I'm still trying to figure out. This disease effects everyone so differently that it is hard to pinpoint what it is causing and what it isnt. Hope this helps.

  • It could be something like Fibromyalgia or another auto immune affecteing muscles, one often leads to another. I know they probabaly mean well but when doctors say its nothing to be concerned about it make you feel like you arewasting their time. I have also found that what bothers one doc another will pass off as nothing very confusing sometimes.

  • Lots of us with similar just to trip in my 2 pence worth. I have awful pain & what the gp described as no muscle stamina I can pick something up but not hold on to it for long. Itch bloods & fatigue all fluctuate. But they have seen something in my bloods to do with the muscles & r investigating but it's got them a bit stumped at the moment. X

  • Keep us informed teddy of luck

  • Hello Cazz22,

    I also have weakness and pain and lack of stamina.I am 50 I have been diagnosed for 7 years, my liver is doing well with urso but all the other symptoms get slowly worse I have no answers I am afraid but I really recognise what you say about seeing other people your age who have so much more energy it is frustrating,I am often overtaken when out walking by people 20 years older! I sometimes feel desperate to sit down when I am out,which is hard because people can't see what's wrong and at 50 people don't expect you to be this way.

    I hope it helps to know you aren't alone and it is real I didn't understand what this was at first and it helps me knowing these feelings are real even if doctors don't know how to help us.

    Let's hope they get an answer one day for us all.


  • Thanks for your reply.i shouldn't grumble when I hear how many symptoms a lot of you have to contend with.i do have a lot to be grateful for.i guess I'm wishing for that magical clock to turn back time a grateful I don't itch nor have that awful fatigue many seem to have.i know if my pain would go I would feel great.lets hope for a pbc break through for all!

  • I have all these symptoms and more, my life has undergone a huge change since March 2009.

    I had already been diagnosed with PBC 6 years prior but went from Stage 1 to Stage 4 in 3 weeks.

    I am gradually getting worse with the itching driving me mad, I sometimes thinking have MS as I can't move my legs. They fill with fluid and hurt when I walk especially if I have to walk upstairs. I even relented and got a disabled sticker for my car for the really bad days but on the good days it doubles the parking time as I'm so slow.

    I have shooting pains in my legs and feet, but mainly my feet at night . Every night my husband messages my feet but it never stops the feeling. I explain the feeling that it is like little electric shocks under your skin. It hurts and makes it hard to sleep at night. Sleeping is very difficult at the best of times but when your legs hurt and you have this zapping feeling it makes it impossible.

    I have many symptoms, bleeding in my eyes (lack of vitamin K) bruising fatigue, confusion, poor appetite. Lack of concentration is huge and lack of strength is debilitating.

    I wish you well and all symptoms seem to get worse as PBC progresses.

  • Omg that's much for it being a slow disease .do you mind me asking if you are being considered for transplant?you have so much to bear.

    My pains are like electric shocks too.i see my consultant on 1st may so I'm going to bring this up again and this time if they tell me it's not pbc related I'm going to show all the replies from wishes and thank you for replying.i hope you get some comfort soon

  • Hi Cazz22,

    I too don't have the typical symptoms of PBC, which is why, along with normal LFT's my consultant won't confirm PBC. However, tingling & numbness in arms & legs, with frequent foot pain (& occasional small electric shocks) is one of the reasons I originally went to my GP. I also have lost most of my strength and muscle tone - and am struggling to get it back - body is not responding like it used to.

    But my instinct, which may by wrong (& I'll willingly listen to other theories), is that, for me, my physical problems should not necessarily be lumped together under one umbrella. I'm 53 and when I closely began to look at the last 25 years or so, I realised that years of yo-yo dieting had made my muscles vanish, as each time I lost weight & tried to exercise, I never completely recovered the muscle tone lost. In all honesty the exercise I do now is nowhere near the level or type I did 30 years ago. And I think the muscle tone went very quickly.

    My foot pain also has possible cause from being overweight several times and along with overpronation has led to flat feet. The flat feet (which I never had growing-up) can really make feet painful. Bare foot first thing in the morning can be a killer. I walk quite heavily & fast which doesn't help & developed a Morton's neuroma which led to a nerve swelling being cut out. I wear arch inserts/supports the whole time & good shoes but still know it big time if I've spent a long time on my feet. Trying to improve the actual way I walk, with less thump, better posture, trying to keep feet hitting the ground correctly, do help my feet and shins but....only when I remember. Most of the time my bad habits just continue....

    My GP didn't have any answers for the numbness/tingling but I may have narrow gaps in my joints for the nerves to pass through, effectively causing the equivalent of carpel tunnel syndrome but in my lower arms and legs. The other thing she checked was vitamin levels. Also in the back of my mind was MS (my grandmother had it) but as it is much, much better than last year, I'm not going to waste any time putting two and two together and making five.

    It does seem a bit odd, the number of people with PBC who also have leg pains & tingling. Makes me wonder ...... but as for making my Consultant think - he didn't take any notice at all, nor of the tiny spider rash I had at the base of my neck, nor the xanthlasma on my eye lid.

  • Hi, yes my legs, feet, arms and hands ache and very often, when I try to do things, there is like an in-built resistance and movements become more difficult and I have become very slow moving. I tend to feel it more in the morning. Intrestingly, I have just spent a week in Tenerife and there I felt a lot more mobile and almost no aches whatsoever! I have felt incredibly tired but started taking Q10 a month ago. Do have more energy now and I have been able to take more exercise. My consultant won't acknowledge pains and aches as PBC related...I really don't understand why.

    Feel better!


  • I too have really painful feet and legs, and loss of strength. I was diagnosed in Jan 2011 aged 50. I also have osteoporosis and osteoarthritis in my limbs. I was prescribed

    co-codamol for the pain but it hardly touches it these days. I have to pace myself and need to nap throughout the day. Shopping trips or anything involving lots of walking really take it out of me and I suffer for days afterwards. Being on my feet for more than an hour or walking up stairs is such an effort, it as if I am wearing lead boots and can hardly put one foot in front of the other. I'm 55 not 70!! I should enjoy going out and about with family and friends, but find I make every excuse under the sun not to go because I worry that I will not be able to keep up with everyone else and spoil their day.

  • I never had the degree of pain I have now since being diagnosed with pbc in 2002 after suffering from the symptoms of Pbc for an year at that stage. I was 32 then. I did have joint pain mainly wrists and elbows but I had put these down to the area was working in at the time a hospital ward for care of the elderly. Had it not been for the relentless itch wouldn't have even gone to Dr. Also put the joint pain down to doing acrobatics in bed at night when itch was at its worst. But recently getting lot of pain lower back and right rib region, Dr says rib pain is from inflammrd gall bladder. Back pain I feel is f due to Osteoporosis and fact not been able to go for walks to trengthren bones but last 2 days getting leg pains also I am awaiting transplant been on list from last Aug but managed to keep working til end of Jan. Also Def feel lot weaker than I used to be.

  • Hi everyone I have pain in my legs and feet I work eight hours standing and walking behind a bar and waitressing after my shift I take my dog a walk and aim in agony and feel that I am wearing lead boots the dog pulls me up the hill home then it's straight to bed. I have just turned 60 and would love to be able to cut my hours but can not as I am on my own. I to used to be very strong and would shift kegs about but not now. Sometimes I think people think I'm putting it on because I look ok but im so tired. Oh and my legs are huge now with big puffy ankles I can never wear a skirt again unless it's a maxi.

  • Oh bless you flora.what should be our golden years have turned out to be somewhat rusty haven't they.hope you get some relief soon

  • Hi, I suffer with pain especially at night in my right hip knee and lower back. I also am a lot weaker than I was this time last year, I know because I can no longer do anything in my garden. I also find that going up stairs is getting more difficult for me. i have no idea what stage I am at with PBC but I also have AIH. I am so frustrated that I can no longer do the things I love. I thought at first it was my age; I am 51 in June, but reading this post am not so sure. I need to go see the consultant and ask some questions. I have not seen a consultant in 6 months, before that last appointment was Dec 2013. I have been given a new consultant, but he seems to have very little experience with AIH/PBC. Am at Pinderfields at the moment but feel I may be better off at Leeds xx

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