Shaking and joint pain.

I'm really a bit worried now my hands shake quite a bit and my joints are painful especially my right shoulder. I've read on here that shoulder pain is common but what about the shakes? It's not all the time but at times it's quite noticeable by others. My partner says that I've changed over the past months, even before PBC was diagnosed. Thinking about it he's right. I feel anxious, tired and I know that I'm suffocating him at times. What's going on? I am a very intelligent person currently off work due to fatigue and never had thoughts that he would get up and leave me. Me don't live together but we are very close and have been together for a numbe of years. Is it possible the PBC is responsible or am I just going through a crazy stage? He says I blame PB C for everything and when we go for my blood results on Wednesday he will ask if memory loss is a symptom. last time I saw the doctor at St James hospital and said I had pain under my ribs and believed it was liver pain he said "nothing to do with PBC". Later I read that this is a symptom. I'm afraid I don't have a lot of faith in what's going to be said me next week and I just hope the Urso is working and my craziness is down to not knowing if the meds are working. This sounds crazy but that's exactly how I feel.

21 Replies

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  • My gastroenterologist when describing stages of PBC to me told me that memory loss is something brought on by PBC. Like brain fog. I too get pains under my right rib. Yes that is caused by PBC as is upper right quadrant pain. We are full of toxin because our ducts do not empty the liver properly so makes sense to me we would experience the same things that being toxic from other causes brings about. Tiredness, depression, foggy brain, itchy, forgetfulness and forgetting how things operate.

  • Thank you, this makes sense and maybe I should take the antidepressants I was offered. They may help at least lift my mood if I take them for a couple of months.

  • Hi Cathie G ,

    you don't sound crazy, I can relate what you are saying.

    I feel I have became a different person just before diagnosis . I don't know how normal it is but I just wanted you to know that you are not alone.

    I think that how you deal with pbc is a combination between personality and the extent of your symptoms.

    I am a worrier by nature (so wish I wasn't but at 41 I don't see that changing drastically )

    I have recently returned to work and although I'm glad to be back in that routine I am struggling and not back to full time hours yet.

    I have always been a worker since 14 with a paper round and returned to work 9 Weeks after having my daughter. being a single parent working I then decided to add study to my list and achieved my degree. my point is, I was never work shy and got angry with lazy people. When the fatigue hit me I couldn't get me head to accept that I wasn't being lazy but the illness. I know there are many people on this site that are in total control of how they feel and deal with their illness and I truly admire them and hope one day to be like them.

    Take Care

    Angela.x

  • I know exactly how you feel, I feel lazy if I need to rest due to the fatigue. I am nearly 58 and have decided that I am going to take early retirement this year (I work in the NHS and would normally retire at 60). I fell very guilty for retiring as my head says I should be working until national pension age (which for me would be 66). My husband is 71 and I would like us to have some quality time together after I retire. My head understands all the reason that I should retire but the guilt still creeps in.

  • I need to show my partner these responses. Maybe he won't want the person I am now but hey, his loss.

    Thank you.

  • hi Cathie,

    I have dealt with same issue ,in fact dealing with it.

    Nobody can tell you about the relationship you are in and how living with a chronic illness affects it. However I can tell you where I am with similar problem.

    I have had a few relationships, had heartbroken on numerous occasions before PBC.I love the partner I am with but, if he can't support me now emotionally then he won't when I'm older and possibly worse. I ask myself this question all the time. ..

    he may surprise you and step up but if he doesn't you are stronger than you think . living with a chronic illness can make you strong, we deal with more than most on a daily basis and still get up to face the next day , even in pain and discomfort....

    Take care

  • Hi CathieG

    I can relate to what you are saying & was Dx with PBC in 2008 even though I think I had it for 4 yrs at that stage. I got shakes in early days although not regularly, I think this was down to withdraw from coffee, coke cola, tea etc which I thought didn't help the cause. Albeit now coffee is good in moderation. We do depend on partner/spouse for moral support & help. Because after all we no longer have the energy we had before which is v difficult to deal with.

    I saw a fantastic Cons at SVH who alleviated any concerns & fears I had about the disease. This helped greatly because worry is another stress when you don't know what you're dealing with. My liver enzymes fluctuated regularly and I worried everytime they raised but now know that this is of no significant value!

    Staying positive & changing lifestyle to suit your energy levels is key. Slip in a little nap when needed too!!

  • There is a condition called Essential Tremor (I think that's its name) I have a friend who is Diabetic (also an AutoImmune thing) and she has the tremor. Talk to your GP about it and see what they say.

  • Hi Judyt, just been reading everyones posts and came across yours about your diabetic friend with essential tremor. My Husband who is diabetic has recently been diagnosed with essential tremor and I wonder if your friend was told if the two are connected. Thanks for any info.

  • No I don't know about that really. I will most likely see her on Friday and if I remember I will ask. Because we both have health issues that are a bit unusual we compare notes!! Great conversations - not!! I do know that the tremor had got quite bad and her GP tried a anti-seizure drug which helped but put her in hospital with a suspected heart attack. Needless to say she has stopped that one and is back to square one.

  • Thanks for reply, my Husbands been offered Beta Blockers, but I think he should try to manage without. Too much medication!!!

  • Hello CathieG.

    Yes shoulder pain can be a sympton connected to PBC. I've never had a liver biopsy (diagnosed via itching and fatigue, abnormal LFTs (liver function test) and abnormal GGT plus I was found to have a high titre of the antibodies - AMA) but a lot of patients undergoing a biopsy can often feel a sudden sharp pain in their right shoulder at the point of needle impact. This is due to a nerve that runs by the liver. I think it is this nerve that gets irritated by PBC when our liver is a bit inflamed due to the PBC. You can also get upper quadrant pain due to PBC. I do occasionally have a bit of a shoulder ache, my right shoulder that correlates to PBC but I've not had a problem as such yet and I suspect that mine might be more in part to manual work and lifting, carrying, etc as I often feel it more when I've done something like this that bit more in a day.

    I think it can be a case of once we have PBC other things that we develop can be instantly thought they are due to PBC. In certain cases they are but we can have other things going wrong too.

    I started urso Dec 2010 at diagnosis. I was 46 then, I am almost 51 now. I did have fatigue back in 2010 but didn't think much of it as I was over-working full-time and taking the work home with me. For me it was the itch that took me the doctor. My fatigue vanished the following year at some point, I just have the itch which is prevalent at night.

    I try not to read too much into what you can get with PBC. Sure I did in the earlier days and have the odd time since but I try to switch off and decided long since now that I would deal with things as and when as some might never happen and that would be a waste.

    YOu didn't say how long you had been on urso, I suspect not overly-long. If so, then it does take time for things to come back to a more even keel I've found. For me my bloods have slowly gone down in the last 4yrs since starting urso (I've had the itch almost 5yrs now) and they have also risen slightly at next check and vice-versa. On the whole I am doing pretty great now but it has taken time.

    I've found you have to make the most of the good days as you do encounter them but I think you have to let it all sink in first before you can start dealing with PBC. I refuse to let it get the better of me, I say this as I don't want to spend the rest of my life worrying about PBC and the things that might occur with it when in reality they might never be so.

    I met up with my husband later 2008 after we had wrote to each over a period of 12yrs (he was in the army when we started). I was a young widowed mother and by the time we met up my children were grown up. We married May 2009 but within 9 months of our marriage I started to itch which led to the PBC diagnosis. He didn't take it seriously during 2010 when I was to-ing and fro-ing to the GP surgery regularly as requested to have yet another blood test to rule something else out. My husband attended the hospital 2nd appointment with me 2 months following diagnosis and I never informed my husband what PBC could lead to (transplant) but the consultant dropped it into the chat at the end and that somehow made the realisation of it all sink in. It is fair to say it isn't easy living with someone with a long-term condition. My first late husband had asthma and over the years we were married (10) it gradually got worse. At times it was difficult butwe took the good days together with our young children and those are the memories I can still look back on.

    Is it possible for you to take your partner along to your appointment and ask the doctor to fill him in on PBC, maybe that might give him that bit more of an understanding.

    Your response about not being the person you used to be, I can really relate to that as I know I am no longer the person I used to be. I always thought I was invincible, raising 2 young children on my own, always seemingly having to be here for my brother and sister (our parents died when we were young adults) and had never really been to see a GP in years, never took much in the way of any meds and then bang, along come PBC and I've to deal with daily itching, tiredness at times due to lack of sleep due to itching and had to accept I have to take a medication every day for the rest of life. There are things I know I'll never do again, nothing major (eg sitting through a film at the cinema, I'd fidget feeling prickly) but all mean I am not that person I used to be.

  • Hello Cathie, I was DX one year ago though prob had pbc far longer. It is a strange condition with many spin offs and not a lot is known about it by GPs. One of the most difficult things is knowing what symptoms are caused by pbc and what you would have anyway. If in doubt, ask pbc foundation as they seem to be the fount of knowledge. Take a deep breath and try to stay calm as stress makes things worse. Let us know how u get on.

  • I have a lot of joint pain and inflammation....I think the shaking/tremors are probably the result of a trapped nerve.

  • Hi cathie.

    Totally understand how your feeling. I have all your symptoms on and off . I ve had pbc 10 yrs now will be fifty this year . Been on urso 10 yrs and it does seem to be controlling the disease. ( fingers crossed) . I work in the nhs and struggle I ve had to cut my hrs down due to the fatigue. I m hoping your partner will understand because you do need support my husband does to a degree but unless you have this condition they will never understand fully. This site is great for support and information. Your not alone . Please let me know how you get on . :)

  • Hi, some of your symptoms sound familar to me. I am post transplant and sometimes shake but that is down to one of my anti rejection tablets. My first advice would be try not to stress, I know that is going to be hard to do, why worry over something that may not be there. As for the pain in the liver area, I never had any pain in that area, test and scans confirmed my PBC. I hope all goes well for you , please remember we all may have different symtoms, also I am not a doctor. Just a thing to mention PBC is normally associated with females as soon as it was confirmed as soon as I got home I checked my birth certificate..good luck..

  • Hi Brummi

    I see you have already had a trasplant and was worrying if you could give me any advice/details.

    I myself am due at transplant unit in 2 weeks time and I am now struggling to deal with every day life athe moment. I seem to be one of the unlucky ones as I have every symptom possible I think.

    Can you advise how the assessment goes and how long you had to wait for a transplant to become available.

    Hope you are doing well & getting stronger every day.

    Thanks Evelyn

  • Hello Evelyn, I really understand how you are feeling. I had my transplant in June 2013, I do feel better for it but recovery is a long slow business. The assessment I went through was over 3 days one thing is always remain POSITIVE. At the time I had a small problem with my pancreas. I have a common blood group , from the time of being told I was actually on the transplant list to the phone call was only 8 days. However I had a few problems after due to a rouge surgeon, but all is OK at the moment and I expect to live many more years. Feel free to chat anytime my e-mail address is available if you want to chat more.

  • Hello Evelyn, Firstly good luck on your assessment. Advice, we all react in different ways the first advice I give is stay calm and do not stress. Be always in a positive mind yes I have had a couple of problems but I am here. I 'm sure you are in good hands. When I was told I was also informed PBC was mainly a females illness as soon as I got home I checked my birth certificate. I am always here for you to chat to..take care.

  • Want to say thank you to everyone for your supportive responses. Went back to doc for antidepressants. Came home and looked them up on the web only to find that one line reads: liver function will be monitored and dose may have to be reduced! I have been given lowest dose of Citalopram. Does anyone else take them? I will not be taking these until I'm sure they are safe. partner came with my to see the liver consultant for my results. I could have hugged her! The bloods for PBC have come down from 1800 to 900 with Urso, this is as good as it gets but great news. Forgot to ask for staging because I know my biopsy would show this but this can wait for next time. She said the memory loss was not related to PBC so I'm going to monitor this . Things may never be the same for my partner and I because of his lack of understanding but this result has given me the boost needed to see a future for Cathie. Thank you all again and I hope I can help others who are given the same life changing diagnosis.

  • Hi - I have had the tremor for years - quite noticeable and embarrassing - it started getting worse couple of years back. I have also been getting very bad headaches - so the doctor prescribed me propranolol beta blockers for the headaches - hey presto has had a major effect on my tremor - also helped my overactive bladder! Try them, they may even help your anxiety - ask your doctor what he/she thinks. Hope this helps - good luck.

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