Hello

[Turvy]

I am new to this and hope to be able to chat with others with liver disease and/or Vasculitis. I feel very lonely not feeling able to talk to anyone who would be able to understand. I feel as if I’m being self-centred if I try to talk about my condition. I’m very lucky to have the wonderful NHS, but they are so busy.

[Kji378]

Hi 👋 You are not alone.

Someone will help and chat soon, hold tight. 🙂 I can not help with Vasculitis I'm afraid.

Pleaee don't be afraid to talk, you aren't being self-centred at all.

Perhaps tomorrow give the helpline a call. They are lovely, welcoming and super helpful.

Take good care 😊

[Turvy in reply to Kji378]

Thank you. X

[Kji378 in reply to Turvy]

🙂🙂🙂

[pushthrough]

Hello, you are not alone. I’m new to liver disease and just joined a few days ago. Others with more knowledge will chime in shortly. Welcome to the community!

[Horsemum101]

Hi, I feel alone too. I joined yesterday. I'm in pain and feel ill all the time. It is hard to talk about it

[oxaram]

Hi, you are not alone. There are a lot of great people here on this community. I don't post as often as I should but being a memberis still a comfort for me and I hope it will be for you as well

[Hidden]

Hi Turvy! I am fairly new to all this - diagnosed about three months ago. When I got the diagnosis I spent the next 2 weeks googling everything about NAFLD, though I'm no expert, this site is the best.

[AyrshireK]

Welcome to the forum Turvy, hope you'll find us a very welcoming bunch and you'll certainly find people with all manner of liver disease diagnosis and at all stages of the journey so you've come to a good place to share experiences.

My hubby has liver disease and my brother as a teenager had vasculitis (it has taken them years in his case to reach a diagnosis as to why and he's had a raft of false diagnosis over the years with his latest rheumatologist finally plumping for Multi System Inflammatory Disorder - he's been on a mix of medication since his teens from steroids to immune suppressants and now on a daily biological injection called Anakinra which has made the world of difference to his life).

Katie

[Turvy in reply to AyrshireK]

Hi, silly me- I thought I’d replied, but I obviously didn’t post it properly.I just wanted to say thank you to everyone who has welcomed me to this forum and to Katie . Katie, thank you for your post. My specialists are still trying to get to the bottom of my Vasculitis and it’s possible link with my Cirrhosis. The dermatologist says he can’t do anything more for me. My rheumatologist (new) I’m hoping will help and the Gastroenterologist looking after my liver is great, but to keep them all ‘in the loop’ is difficult and communications can take months. My feet are VERY sore/burning. I assumed it was because I lost the skin on the soles of my feet due to treatment for Vasculitis, but am now to be referred to a neurologist as they think it could be nerve damage due to my damaged liver. I wish (no doubt like so many) that I’d never drunk alcohol. Yet even now (nearly a year of abstinence) I found putting up the Christmas decorations rather empty without wine or a warming whisky and ginger. Silly I know. You mentioned Multi System Inflammatory Disorder. This sounds very likely. I’ll investigate and mention it to the specialists . You know how it is though, although I only want to help them and for them to subsequently help me I feel as if I’m sounding like a know-all! Or hypochondriac! They have delicate (if at times large) egos and I don’t want to be rude.

I get so tired . I can be fine and everyone thinks I’m looking well, then, all of a sudden I feel absolutely exhausted. I’m glad I’m looking better, but it somehow makes it harder as others cannot understand how unwell I am. I want to smile, but inside I sometimes feel like weeping. I keep getting mixed messages- my GP says my liver is doing extraordinarily well, yet the specialists lead me to believe I’m lucky to be alive…? I suppose I’m just confused and unable to get definite answers . It’s so lonely. Again thank you to everyone’s response- it DOES make me feel less alone .

[Dogbot]

Hi Turvy you go ahead and talk and whinge as much as you want 😂🤣, there is always someone that will listen and talk, that’s what this site is for so no one feels lonely. Go for it 👍💕. Stay Safe All

Dogbot 🐶🌈

[Hidden]

Hi and welcome,

Are you in the UK? if so, we have a nurse led free helpline 0800 652 7330 open Mon to Fri 10am to 3pm if you would like a chat?

We also have some brilliant online support groups, here is a link to register interest;

britishlivertrust.org.uk/in...

Warm wishes

Trust1