too much pain :(

[Kirsty111]

Hi everyone I'm new here. I can't type much as pain is too bad Diagnosed 2 months ago with liver fibrosis. Pain is too bad I can't stand it. Had to go in hospital last Tuesday and they said they can't fix me - just got tramadol. They say liver is too big and it's pushing on my ribs, right lung and stomach. Thanks xx

[Kirsty111]

What does alp and crp mean on blood tests? xx

[jules45]

Hi, I'm sorry to hear that you are in such pain. I have trouble with pain due to the size of my liver and spleen and also have osteoporosis. I have pain relief that my liver can tolerate but still it hurts. I also have a gall bladder full of stones but the consultant hepatologist has said leave well alone as I am in the minority that won't survive the aneasthetic. Have stopped eating big meals to ease pressure in my stomach and healthy snack instead. I hope you are being looked after properly as just saying your liver is too big is not acceptable (my opinion). Have you seen a hepatologist and if not you should ask for one asap. The fact you have been in hospital makes it worse as they let you go just saying liver too big.

Hope you get things sorted as your post reminds me of what I went through before I got assessed properly and had the right care and medication.

Very best wishes

julie x

[Kirsty111 in reply to jules45]

Hi hun - Thanks for replying. I've been referred to a hepatologist, finally after 2 months, waiting for a letter. I've been treated disgracefully by all the Dr's. They sent me home in pain last week, saying there's no more they can do for me. They've put Chronic liver disease on my discharge letter, which is right I suppose. I've not eaten properly for 3 weeks now - My appetite has completely gone, but nobody cares

[jules45 in reply to Kirsty111]

Hi, I care and so do the people on this forum. With your official diagnosis of chronic liver disease you are entitled to proper medical care and attention. Have you had an ultrasound yet. That is what they start with to see what damage is done. Most importantly YOU MUST EAT. I'm sorry to sound like a preacher but I have had liver failure twice and I'm only here now is because I forced myself to eat. I wasn't eating prior to liver failing as it would make me feel queasy. I have cirhossis now which again, the same rule applies, I have to eat. I am a recovering anorexic (suffered 5 bouts) so you can imagine how it feels to be told to eat but I have had to, to save my life.

Keep calm, and ask questions about your care plan. It took me a year to get a hepatologist so make the most of the time you get with him/her to ask all the questions you need to ask.

best wishes

julie x

[Catfishjumpin in reply to Kirsty111]

Hi, you know, you its you who must care not the doctors. You can keep changing doctors till you find one you trust but you must start now to take care of yourself. Limiting food and fluids drastically will help with the swelling of your organs. What you eat is so important, give up foods with sodium, canned foods and eating in restaurants. Are you eating meat? Eat very little of that. I am so sorry but you will continue to find that this disease is on us. Doctors are doing the job they were educated and trained to, all of them are just humans with their own dispositions. They very well may not know of anything else they can offer. I have liver cancer and they only see me once every six months but its over 2 years now and I can still cycle 40 miles in the sun. I like the things Jules offered you to consider. All of us here are struggling to stay alive, we are all in the same boat as you so keep coming here to learn good things and find the support and experience you need.

[Kirsty111]

Thanks hun, I had the ultrasound last month, I haven't eaten yet today, but will try now xx

[RodeoJoe]

What's the cause? The "good" thing about fibrosis and a swollen liver is that often its reversible. After fibrosis the liver could become cirrhotic, which is not reversible but the liver then shrinks.

If they can identify and treat the cause of the liver disease you could get yourself back on track.

[Catfishjumpin in reply to RodeoJoe]

As I understand it does become very enlarged then turns into a hard small knot before it finally dies. But I am no expert, thats what I have read many times about the last stage

[berlington]

Im sorry to hear about your pain x

Why cant they help you ? Liver fribrosis can still be reversed I had grade 4 in 2007 it has only just come back as a fatty liver today. Do you take milk thistle? and cleanse your body with foods ? drink water ect all helps dramatically trust me, I swell up and get such pain under my ribs I can't bend down, but if I rest eat well ect it DOSE help xxxx

[briccolone]

How were you diagnosed with fibrosis and what level is it and what is the cause? Fibrosis can be reversed there are numerous examples on this site. Please post your blood tests and anything else you've been told.

[mrsmerlin]

Please don't panic too much. Chronic liver disease simply means it has gone on for a while.

The pain will be from things around your liver being pressed on as it is swollen. A dr can tell this from palpation (physical exam).

A swollen liver is by far the best way to be if you have liver disease as it contracts and loses all flexibility when things start going pareshaped.

Have you been examined for gallery stones? These could trigger your added pain.

I am sorry you have had to wait for an appointment and to be honest two months is not long. You have to remember that there is a limited number of hematologiststudents and their clinics fill quickly. Also there will be people presenting with much more advanced disease than you, which is a good sign if you think about it.

For the pain there really isn't much they can do to be honest, not at this stage and tramadol is a strong drug so they are doing their best.

Just realised how teachery that reads but I am sure you know it is all from understanding.

One thing that helps me when the pain is too bad is to lean forward and rest your arms on the knees. This relieves the pressure for a while and helps your body take a break.

X

[Kirsty111]

Hi all and thanks xx my 2 separate Dr's are now saying there's nothing they can do for me except give painkillers. They said they will give me whatever pain meds I want. I asked for 30mg Co codamol. They are both saying that my condition is not reversable. I've not got anyone to give me a third opinion.