Jan

[janetfolley]

Does anyone else who suffers from PBC get terrible leg pain and extreme weakness, have mentioned this to my GP who says it's arthritis ,I have asked many people who have arthritis and their symptoms are not the same. Some days the weakness in my legs are so bad I can't lift up to walk. Advise please.

[Hidden]

Hello janetfolley.

I suppose it might figure that we can encounter painful joints and ill bone health with having PBC as it is said that we can start to have problems absorbing certain vitamins (fat solubles) that can help aid our bones.  Of course too being female also contributes once we have gone through the menopause as it is said women are more vulnerable to bone problems like osteoporosis so I suppose for some of us it is a case we are doubly at risk.

I was diagnosed with PBC December 2010 and now 5 years on and being 52 in the next week, I sometimes feel the creaks and squeaks later at night myself.  I have not yet quite completed the menopause but it's quite imminent.

In the last year I have developed a bit of a stiff left hand thumb and though as yet it doesn't give me pain, I can certainly feel it when I am using it in normal daily life.  Not sure if it would be wear and tear of onset arthritis but for now I just refuse to think about it as it isn't significant as you state you are having leg pains.

I think with all things they can ease up one minute and then return with a vengeance the next.  I am in England and I have a lot of friends who are retired and often complain in the colder months that they are not feeling as good as they do when it is warmer weather with their bone problems.

I am no doctor but I am sure your doctor would have asked relevant questions regarding your leg pain to rule out any circulatory issues perhaps?  I can't say how the pain of arthritis is, I am more an expert as many on here know regarding how the itch of PBC feels.

[treefrog12]

Hi Jan - my legs constantly feel weak (even when sitting down) and painful tho' the pain fluctuates from discomfort to twinges and my pelvic region is always uncomfortable - I had an MRI of my sacrum on Monday even tho' I told the rheumatologist that the pain in that area is intermittent, he said it would put my mind at rest so I wasn't going to turn down any help!

I sometimes find when walking that my thigh muscles tense up suddenly, more often that not luckily one side or the other, and I can't put my weight on that leg - it will ease after resting but then niggles for hours after - tricky when both legs go at once then if I can't grab something/someone or sit down straightaway I have nearly fallen over a couple of times, I must look funny! And I know what you mean about the weakness yet 'heavy' feeling/inability to lift your leg. I had tests for arthritis but don't appear to have that, bone density scan luckily only showed osteopenia which I've known about for several years (PBC diagnosed Dec. 2015).  

I will be interested to hear if you get any more info., I often find struggling to walk harder to deal with than my other symptoms as my passion has always been hiking/walking whenever/wherever possible.

Take care now xxx 

[janetfolley in reply to treefrog12]

Thanks for your reply. I've had MRI on spine as Gp thought I could have trapped nerves hence weakness in legs but MRI showed nothing. Seen arthritis specialist but no one understands the pain I'm in. Went for short walk yesterday could have cried as in so much pain  in muscles had to limp home and uncomfortable night as pain wouldn't go away. I feel I'm getting nowhere I'm only 67 and feel ancient, I was so full on energy sport bring my no 1 and now I feel crippled.

[treefrog12 in reply to janetfolley]

Aww bless you, I really feel for you and inderstand what you're going thro. Over the years (before PBC and fibro diagnoses) I've had so many problems in legs and arms that suggested trapped nerves so have had MRIs of different areas, inc. one full body ( not easy trying to lie still for that one it took approx an hour!) and, like you they showed nothing BUT I know somethings not right. At GP Monday and she said it sounds like a nerve is trapping - I should've waited to hear what she was going to say next as, when I told her I'd had tests for that before (I was at another docs then) she dismissed the idea altogether, talked about pills by which time I'd forgotten about it! Only just getting going this morn. Legs not feeling too bad at present but I did very little Tues. Fingers tingly, taking me ages to type this! And tingling across top lip so doesn't really bode well for later this morn. when I have to attend an appointment at the Jobcentre! I tried accupuncture some years ago in my thigh but I found it so painful when the needles went in and only just recovered when it was time for next session that they gave up after 3rd appt. 

I'm sorry, I have not helped you one bit there have I? 

I do hope you get some answers and I hope it is some comfort being able to discuss your pain on this forum with folk who understand what you're going thro and sympathise.

I'm 51 and it looks like my contract at work will be terminated in the very near future - as if I haven't got enough to worry about!

Try to have an easy day, little steps. 

I hope I haven't worn you out with my ramble - ooo, wouldn't that be nice, to go on a lovely ramble on the moors in the lovely spring weather? If only!

Take care

Cate  xx

[martinap]

Yes I have intermittent leg pain and weakness.

Where is your pain located and how does it feel? Did you find out what might trigger the pain to increase?

I have mostly upper leg muscle pain and corresponding weakness, some days it is better. Some other times legs start getting weaker gradually over the course of two three days and it feels like having to drag them along. Then the pain sneaks in mostly at night shooting muscle pain extending to the whole leg and sometimes joints too. In general every day some task which you use upper muscle legs for like getting up from chair on those days especially difficult. Help myself with hands without others noticing.

In general after months of adapting diet and walking every morning early it is bearable now.

But I still get episodes where it increases triggered by bad food, stress and sunlight mainly and at times just appearing haven't found all the triggers yet.

I was a big hiker too a couple of years ago. Happy to do small hikes in the early morning now. Just can't count on beforehand if that day fit enough. Well but I can often and am happy about that. Definitely not Ben Nevis material anymore 😉

Occasional bouts of pain are very bad and extend to shoulders and arms but legs are worst. Then cold helps! Pack my muscles with cold packs or peas from the freezer!

Hope this was of any help. You can always drop me a line for more info. Martina

[Hidden]

 I suffer with leg pain feels like all the bones but rhumatology dx fibromyalgia and vitamin d deficency, this improved somewhat on the vitD but I still have the weakness that makes getting up from sitting or laying down difficult. I seem to stumble quiet a lot when I am walking these days too and can feel the weakness creeping up but I continue with walking daily as I feel it helps keep the strength in the muscles. 

[Gioielli5]

Hi Jan, I believe many of us suffer from bad aches and pains. My shoulders are particularly bad. GP told me it's tendonitis and will go away - but it doesn't!! Two of my fingers are very swollen and sore and this is osteoathritis and nothing can be done for that either. My legs and hips also get very painful if I do a lot of exercise - or even just too much walking! Very difficult to keep fit but do not want to become a couch potato! Do you also hit a "wall" when you do too much and come over totally weak and quite emotional, need to sit down and just totally relax for a while before carrying on - a fix of caffeine often helps! Just the joys of PBC mixed up with getting older (nearly 62) have had PBC for 10 years and on Urso for 6. Take care and keep filing. Xx

[janetfolley in reply to Gioielli5]

thanks for reply. Yes at last someone understands. You must feel like I do. I also was extremely fit every day exercise was a big part of my life. Now gentle walks every day with my dog 15mins is all I can manage then the muscle pain starts and have to drag myself home. I try not to get depressed and have to give myself challenges as I refuse to allow myself to come a couch potato. I just wish someone would tell my exactly why!!!!??? Is it PBC causing all this pain or some underline problems.

[GrittyReads]

PBC can cause a lack of absorption of vitamins and subsequently minerals .. and this in turn can lead to osteoporosis and arthritis type symptoms. I don't know a huge amount about it, but I do know that if you are suffering joint pain then you should ask for vit and min testing - especially vit D and calcium - as well as a bone density test and joint check for arthritis.  Also, when PBC was diagnosed, were you checked for all other autoimmune diseases?  Often PBC sufferers have other conditions, and some of these could be playing a part.  If your GP is reluctant to investigate, further, can you contact your liver consultant ?  I was tested for 'everything' and I don't even have PBC, just AMAs.

Take care, and try not to stress, but I would pursue this further as it shouldn't be ignored.  Talk to the 'PBC Foundation' advisors: the link to their website is at the top of this page, where you will find phone and email details to talk to the advisors - they are excellent, and if you join (it's free) you get their PBC 'Info' compendium.

[dollydaydreams]

Hi Janet yes i get terrible pain, it started in my shoulders and gradually spread throughout my body, last friday night i stooped to show my husband something in the hall, my knees gave way and I ended up flat on my face on the floor and banging my head on the pantry door and could not get back up, my husband had to drag me along the hall floor ( good job it's wood) to the bottom of the stairs so i could crawl up three to then launch myself back to a standing position, so far I have been told frozen shoulders ( Then no it wasn't ). Osteoporosis ( Then no it isn't your Osteoporosis that is causing it as that does not cause pain but the osteo drugs do ), Fibromyalgia ( then no it isn't ) so now I have been just been told I just have chronic pain without any reason and given a stronger drug that does not help with muscle weakness, so I don't really know what the answer is, i have tried to exercise but have had that much muscle loss that it seems like a hopeless task as i end up in even more pain and fall over. It's getting to be a bit like the goon show in here :o) and it's a good job i have a very good sense of humor. I also suggest asking the PBC foundation as i have been given some good advise by my coordinator. 

[Hidden in reply to dollydaydreams]

Ha, I also do the 'falling down' trick - often. ^_^ 

For me, the weakness snuck up on me. About seven years ago I decided to play hopscotch with my youngest grandchildren, well I couldn't launch myself off the ground, i.e. I couldn't hop. A few weeks later I went for a bike ride, getting on was difficult, but getting off was both spectacular and embarrassing - I couldn't get my leg over the bar (it was girl's bike), my leg slipped between the bar and the bike chain, I tripped and ended up face down in the dirt with the bike on top of me. My audience had a difficult time trying to untangle me from the bike - needless to say I haven't touched a bike since ;-(

I think you will find that bone, muscle and joint pain are listed as one of the 'symptoms' of PBC.

mayoclinic.org/diseases-con...

I have also found a link to an interesting article mentioning muscle wasting - quote: 

"The features of advanced PBC are no different from those of other causes of cirrhosis and include muscle wasting, weakness, gastrointestinal bleeding, ascites, encephalopathy, the hepatopulmonary syndrome, and hepatocellular carcinoma.

" Cited at: 

borland-groover.com/gi-educ...

[gmo3352]

Hi Jan

I had rheumatoid arthritis long before my PBC diagnosis, but my recent leg weakness and swelling just does not not feel like RA. When I asked my doctor, she felt it might be due to both the Vit. D deficiency, as well as the fluid retentention and corresponding  leg, ankle and foot swelling of the PBC. She "upped" my Vit D dosage.  She also said to try compression socks. Oh my goodness! What a difference! I just wear the 15-20 compression rating knee highs ( I got dr. Motion from Amazon, there is all styles and brands, I don't think it matters) it really reduced the swelling, and walking is much less painful.  I too was falling all the time, but blamed my MS. I haven't fallen in over a month, which is amazing for me. I so hope it will work for you! The last time I fell, I broke my husbands toe when he tried to stop my fall. I am still heartbroken I caused him such pain...yikes!! The guilt and heartache!! 

I so hope the socks relieve your pain and help leg strength. 

All the best!

[dollydaydreams in reply to gmo3352]

I was thinking of getting some compression for my belly, like a pair of spanx :o)

[Cat19]

Hi Jan

I have had the terrible leg pain on and off for 16 years and the terribly tired and itchy skin, it took the Gp two years to send me to the liver consultant who diagnosed PBC . I take Urso, but still get terrible leg pains was not arthritis but this year I was diagnosed with oestiarthritis of both hips I have taken tramadol for years it takes the edge off I hope you can get some pain relief for your leg pain.

[Bobbycat12]

Hi

I have had painful muscles and nerves before PBC which was diagnosed then as fibro myalgia. My dr. seems to think the pain I feel is still that and not cirrhosis, i am not sure. I have a close friend who falls sometimes and has joint pain etc but she has no PBC .In fact most of the fibro group I belonged to abroad didnt have PBC. Could it be just that we have this pain and attribute it to PBC?? 

[Jowen]

Hi Jan, my legs are bad, too. There's like an in-built resistance when I go to work in the mornings. IT makes walking heavy and hard. My right hip hurts a lot too but my gastro is just not interested in hearing any of it. He doesn't know what to do and keeps repeating my bloods are not bad. That' s great, of course, but it would be nice to find someone who'd take an interest and perhaps suggest something that could be done about it. I have tried a number of things but so far, nothing has made any difference at all - except being free during the summer and then do very very little and spend a lot of time in the water.