Pain and fatigue

[Twill]

Hi lovey people

I would like to thank each and everyone of you that replied to my post. You don't realise how much u have helped me by doing so. This is what I needed and I should communicate more often with U. I am due to c my consultant next month so I will talk to him about my concerns. I want to ask him to inform any patient he has with PBC to contact me if they r scared, just like I was when I was told I had it - not that I am an expert, far from it - I found out most info from being on this forum and research on the internet which sometimes terrified me.

I don't think the doctor will share information because of patient confidentiality, but it is worth a try.

Take care everyone,

Love Tricia X

[boneytoys]

I don't think he will either share info

I tried that with my consultant

All the best

[tama]

Ihave stags 4 pbc and i was diagnosed around 2 years ago, they say i will have to have a transplant sooner or later but they say I'm stable now so they don't want to talk about it. I was recently diagnosed with RA and i have lots of other things diabetes...etc...i never stop being scared and i get depressed alot,i feel like I'm sleeping my life away and i have a10 and 13 year old. I'm like you i need someone like me to talk to. I am 48 years old and life in texas, so if you would like to visit sometime i would love that. 😊

[Becca75 in reply to tama]

I'm so sorry to hear you're in stage 4 already! I also have a 10 year old (well in a few weeks)... I try to be strong for him and everyone, but it's always in the back of my mind that it's progression, etc is different for everyone. I try to be positive, but there are definitely moments when it's hard. I'm far from texas but if I'm ever down there I'd like to visit too lol

[Twill in reply to tama]

Hi Tama

I am sorry to hear you r so unwell and depressed. I wish I could visit u but I am in the UK. Do u have the support from any family members or friends. I am fortunate my husband is really good albeit he doesn't know why I am so emotional now, I cry so easily. I am a young at heart 60 year old but my fitness levels have declined so much since having PBC. I have my first 2 grandchildren on the way and I want to stay well so that I can enjoy them. I also get really tired but find it hard to sleep more than 6 hours, even though I am on amitriptyline. I have read recently that others with PBC have trouble sleeping but I don't know if there is a connection.

Please keep posting and try and stay well for your lovely children.

Love Tricia x

[Hidden]

Hello Twill.

I wish you good luck in contacting any patients with PBC from hospital out-patient contact.

I think you are more than likely right with the last paragraph, info will not be shared. At my last GP surgery I did ask but was stone-walled. I ended up with a short lecture on patient confidentiality which at the time annoyed me greatly. Due to the fact I did state that I know about patient confidentiality and that I wasn't asking for any patient details at all in my case as I didn't want to meet anyone else with PBC (knew that wouldn't happen, the odds were impossibly high in a GP surgery), I just wanted to know if any of the GPs saw anyone else with PBC so I could see the same and perhaps together we could all gain from it.

I thought reasonable, the surgery did not! I have never found out if there is anyone else with PBC even at my current GP surgery.

[Twill in reply to Hidden]

Hi Peridot

Thank u for the information. I actually think my GP will b the same as yours so I will play it by ear whether to ask or not x

[bobbycat in reply to Hidden]

Would it be useful to put something in s local paper..an ad or even send on info to them? Just an idea

[Hidden in reply to bobbycat]

Hello bobbycat.

You wouldn't get me advertising I've PBC! I've not told more than a very select few of my friends I have PBC. My small family have kept it to themselves too.

[bobbycat in reply to Hidden]

Hi

I thought more about just giving an email on an ad especially made up for just pbc.....it is anonymous. I dont mind people and friends knowing at all.....saying I have actual cirhossis was a bit tricky but I just say autoimmune illness that causes it and no one seems bothered but then everyone is different and your reasons are yours. . There are very few pbc people in my area it seems so its a shame that there is no group yet.

[dollydaydreams]

My GP has told me that I am the only patient the practice that has with PBC, I didn't ask him he told me. My new consultant Has other patients with PBC and i know one of them, won't say who though as it's not my place to do so.

If my GP does get a new patient with PBC I have a feeling i would be told but not their name.

[Hidden in reply to dollydaydreams]

Hello dollydaydreams.

I'd like to have known if anyone else had PBC who were registered at the same GP surgery as me as mentioned above, just so might be better if anyone else and (we) were seeing the same GP.

I think at the hospital if you were to get chatting briefly to other patients it might just come out. I know when I was attending it was the Hepatology Clinic that day, the consultant gave talks to GPs on PBC as he said so.

[dollydaydreams in reply to Hidden]

I didn't ask my GP, he told me in a row about pain ( we often have them ) He said you haven't got fybromyalga, I shouted well what wrong with me then if you say it's not from PBC and he said Well that's just it we don't know as you are the only person in the whole of the practice with it..............sneaky eh! :o)))))

I know my new consultant has other patients with it as i was told beforehand.

[Hidden]

Twill, not sure where you are , but have you thought of meeting your local PBC volunteers or becoming a volunteer with the PBC foundation yourself, I think your more likely to meet others that way. I don't think Any GP or consultant would be able to give out any information.

You can use the facility on here to see others who are within your area. ( at the bottom of the page click people near you). It will only show those who set up their accounts agreeing it but it may be worth a try if you want to meet others.

[Twill in reply to Hidden]

Thank u Candy12 x

[Hidden in reply to Twill]

Hello once more Twill.

Hope you are not in Lancashire as there isn't a volunteer for the PBC Foundation here though there used to be one, just seemed to vanish and nothing listed. I won't make enquiries regarding this but had there been someone listed I might have done so but it's not a definite.

[liver-bird]

When I told my Consultant that I had joined PBC Foundation and HealthUnlocked, thanks to a very resourceful friend who found them for me, he apologised and said he should have told me about them. He did however warn me not to trawl the internet because there is some scary and out of date stuff there.

So it would be good if we all ask our GPs and Consultants to tell the newly diagnosed PBCers about the Foundation and HealthUnlocked because there is such a mine of information and support available.

This is a way of putting patients in touch without breaching any confidentiality so most of them will do it. Diane

[Becca75]

that's nice that you want to reach out like that - if he doesn't want to share your information (even if you give permission) tell him to share this forum information so they can join and talk to all of us