Joints

[Purdy2017]

Hi reasontly I've struggled abit when I get up from the sofa ect I take regularly exercise just noticed it more in the last month does anyone else struggle? I go for regular dexto xrays wich are ok

[butterflyEi]

hi Purdy2017 the first thing that springs to mind is how are your vitamin D levels? Assuming it is now your winter and days are shorter and darker vitamin D is difficult to get from sunshine. I have taken a vitamin D + K vitamin spray by Bodykind for quite a few years but more recently there is a lot more in the general media and conversations about how low vitamin D will impact on our skeleton in general.

Here is a link to a professional paper which you may like to look at

ods.od.nih.gov/factsheets/V...

[Purdy2017 in reply to butterflyEi]

Hi butterfly yes I do take vitamin D as my consultant mentioned it may be I need a stronger dose I cant remember wot dose it is as I'm working at the moment I think its 1000 mg

[Lagathavikings]

Hiya. What do you mean you struggle getting up from sofa. Do you mean you feel weak or in pain?? I cannot do much atall but I'm recovering from covid so mine is all mixed together I think... I cannot work anymore. I was full time before but things have changed drastically.. I've accepted that part but even showering tires me!!!!

[Purdy2017 in reply to Lagathavikings]

Hi thankyou for your reply yes I'm stiff with ache joints and very tired I've just noticed over the last few month I'm finding it difficult I'm 48 worked all my life I dont think it will be to long till I give up even though it makes me fill low even the though of it losing my independence 😥

[Purdy2017 in reply to Purdy2017]

Do you get any help finacial help or are you set up ok x

[Lagathavikings in reply to Purdy2017]

Yes I feel the same. Got no motivation for anything. Showering us a struggle but I've had covid last month so could be adding to it. I've only just been diagnosed last month so at the moment my partner who I live with is supporting me totally. Will look into getting something for myself just can't cope with anything at the moment xx your not alone hun.. Xx how you feeling mentally?? I struggle quite a bit xx

[Purdy2017 in reply to Lagathavikings]

That's good then if I think about it it makes me quite emotional I try and be like everyone else but when I cant be it really hurts and upsets me but I'm good at hiding it and putting on a brave face pepole I work with just think I'm normal but deep down I no eventually that I'm going to loose my independence and have to rely on the government and I've worked all my life xx

[Purdy2017 in reply to Purdy2017]

I'm on antidepressants and my brain fills lost in space with having no energy x

[Lagathavikings in reply to Purdy2017]

Hey hunny.. Don't be hard on yourself... You didn't ask for this. Firstly I'm no expert on all this. It's new to me. But... Let me say I worked all my life I'm 56 and it came with a shock that my working life is over. I've accepted my life gas changed but I do admit I struggle with the fact I lay on sofa most of the time. Just can't do much.. I'm also on antidepressants.. Been on them ooooo must be over 15 years. Sorry brain fog stops me knowing and remembering!! Don't feel guilty about work. You deserve to put your health first. Message me Anytime hun. Always here for you when I can be x

[Purdy2017 in reply to Lagathavikings]

Thankyou for your support alot of the time I do fill alone I have my husband hes at home all the time hes on pip hes classed as disabled hes supportive were he can be but I still dont think people understand unless there going through it thankyou and I'm here for you to if you wont to chat anytime take care x

[Lagathavikings in reply to Purdy2017]

Oh bless you. Xx. By the way my name is Traci... I live in Essex UK. Where are you roughly if you don't mind me asking.?? Do you join in on the pbc foundation with Robert and collette. Think her name is collette!! Lol. If you do I'll say hi to you xx. I know EXACTLY how you feel. Trust me. We in the same boat... I'm there with you x it's like I've found a whole new lot of friends now. Ones that understand. Means everything to me. The foundation is great don't you think? Xx glad I found it x

[Purdy2017 in reply to Lagathavikings]

I'm in chichester west Sussex no I dont join in the forum I dont no much about it is it a video link ? By the way sorry my name is Lorraine if you could let me no about the forum I would love to that would be good for me xx

[Lagathavikings in reply to Purdy2017]

Oooo that sounds a nice place.. Chichester. So hi Lorraine!! As I'm not great with technology I think if you contact Robert at the pcb foundation he will be able to help you set it up... Do you know the one I mean??

[Purdy2017 in reply to Lagathavikings]

Yes ok thankyou are see how I get on xx

[Lagathavikings in reply to Purdy2017]

Sorry I can't be more helpful... It is good to hear them talk.

[Purdy2017 in reply to Lagathavikings]

That's ok I really appreciate your help xx

[Lagathavikings in reply to Purdy2017]

Today at 2pm is a professor James neuberger from Birmingham. You can ask questions and watch the answers on the Facebook pcb foundation page. U can submit questions beforehand on the page and Robert and collette put them to him where he answers. If you look up pcb foundation on Facebook it may send u a link. I really think it is good hun xx hope I put it down where u can understand what I meant. I go round the houses sometimes 🤔😁❤️❤️

[AC025 in reply to Purdy2017]

Hi. I am 48. Work in IT my days are crazy busy but Yes!!! This is really similar to how I feel and it’s so frustrating because it’s hard to explain to people that just a year ago I was great....no issues getting up from sofa or out of bed or taking a shower and now I am struggling to stay awake and functioning as a basic human being and it’s depressing! Recently I had to stop taking Ocaliva because of side effects and there is nothing else for me to take according to my specialist. I am on Urso forever but it stopped being effective. Basically have to get into a trial and be a lab rat.....or just take the urso and continue to have inflammation in the liver. This disease is insidious. Sorry to be a Debbie downer..... just know the stuggles are real and you are NOT alone!!!! I fight along side of you

[Purdy2017 in reply to AC025]

Hi thankyou for your reply my head goes round and round when it comes to work I think are give up work but then are be worse of then I think about my health it's a battle on top of fealing tired and brain fog all the time I would just like to be normal again x

[gwillistexas in reply to AC025]

AC025...I read your post and see you were taking Ocaliva. I have been on it since September 2017. No side effects. What did you experience? What I do know is my fibrosis increased on it. My hep is starting a clinical trial in Dallas, on a new drug from France. He said he is encouraged by what he knows so far. I don’t know if I will meet the criteria for the trial and not so sure I want to be a guinea pig myself. I personally had rather come off Ocaliva. I m allergic to URSO so I’m in the same situation as you with nothing else to take.

[AC025 in reply to gwillistexas]

Hi! It’s frighting isn’t it?! I was really hoping Ocaliva would work. It is a super expensive drug too. The side effects were insomnia, super itchy but it was the fatigue that ended it for me. I mean with PBC there is already fatigue..... this fatigue on Ocaliva was intolerable for me personally. It was a struggle to do normal things like walk the dogs or laundry and I did regularly shower but it was so hard to get me there...... just took a lot of energy I did not have and my professional life? Ugh had to hid to from them...big fake smiles and pass out at lunch. I need the insurance!!!!!!

[gwillistexas in reply to AC025]

Yes it is. Ocaliva brought my numbers down quickly and they stayed down until last year. That’s when I had a biopsy and found out what was going on as far as fibrosis. Hep wants to keep me on ocaliva for now. I’m questioning if it’s not working why stay on it. So, we shall see...

[AC025 in reply to gwillistexas]

Indeed! A lot of blood tests and waiting. So glad to have this communication with you! We must stay strong and power on!

[gwillistexas in reply to AC025]

Yes ma’am. Thank You!😊

[Purdy2017 in reply to AC025]

Yes defanatly somedays its easier said then done I had a bad day the other day I just wanted my life back but then I shrugged it of again it's no fun but you just have to work with wot you have x

[Purdy2017 in reply to gwillistexas]

Hi I'm taking ursolic I'm doing well on it it's just the pbc tiredness and the dry eyes

[Purdy2017 in reply to AC025]

Yes it's no joke coping with this you try the best you can putting a smile on when people around you having a laugh and joke you try And join in but you havant the energy and it makes you fill miserable and you just wont to fill yourself again look after yourself kind regards

[Purdy2017 in reply to gwillistexas]

Hi I'm taking ursolic and my reading are good it's just the side effects from the pbc tiredness dry eyes hope you get the help you need thank you for your reply

[gwillistexas in reply to Purdy2017]

Thank you!

[Purdy2017 in reply to gwillistexas]

Anytime x

[Lagathavikings in reply to Purdy2017]

How are you hun xxx

[Lagathavikings]

Hi hun. Just thought I'd check in on you. Hoping your OK.. Have you thought anymore about stopping work?? Love traci x

[Purdy2017 in reply to Lagathavikings]

Hi how are you doing x

[Lagathavikings in reply to Purdy2017]

Hi hun.... I've not been great had a few ongoing symptoms after covid last month... Had bad anxiety but on higher dose antidepressants now... Settled a bit... Pleased my blood test showed my liver enzymes still coming down so that's good.... Anyway how have you been lately? Xxx

[Purdy2017 in reply to Lagathavikings]

Hi not sure if I sent the last message that's not good wot symptoms did it leave you with it must be awful but understanding wot you have been through I'm glad your resaults were reassuring I've decided to give up work I'm just to tired all the time theres no quality of life then to do wot I enjoy doing xxxx

[Lagathavikings in reply to Purdy2017]

I've had all sorts huni.. Sinus problems... Pins and needles in legs.. Shaky.. All sorts.. But hey ho...!! So you decided to leave? Its no good if its having bad affects on you xx welcome to the not working club!!! Xx how you felt other than tired?

[Purdy2017 in reply to Lagathavikings]

Lol ok actually I no it's the right decision wot will be will be still trying to come to terms with it xxxx

[Lagathavikings in reply to Purdy2017]

At least your doing the right thing for you xx

[Purdy2017 in reply to Lagathavikings]

Yes defanatly thankyou I always put myself last xxx

[Lagathavikings in reply to Purdy2017]

Don't put yourself last... You are important as anyone xx

[Purdy2017 in reply to Lagathavikings]

Yes true xx

[Purdy2017]

Hi that's kind of you yes every day but just cant make the decision xx