After a long night of pain and itching and burning hands i feel so afraid and paralysed by fear .after finally getting to see a gastro after over a year of suffering and some tests im no further forward . I know now the danger invoved in alcohol but i never knew getting a diagnosis of liver trouble could be such a drawn out job and i never knew so many people do not undetstand liver issues .i have been fobbed off and now im very fightened and dont know where to turn for help my symptoms i know now point to something bad and i think my livers in a bad state but inever knew that i would be left to suffer this burden alone .my gps have been no help my gastro only saw me once is now ill off for 2 months .i phoned the secretary for help told her i was in pain in my liver and i could not go to the loo without lactulose ..she took my number i heard nothing for another week then a letter came signed by a dr i have never met saying my symptoms of pain and bowel misfunction cannot be liver disease .and basically go back to your gp. I was shocked i spoke to my gp a week earlier he said go back to the hospital .he then said if you want more tests a liver biopsy could kill you ..basically no one wants to help me now i dont know what to do .my ultra sound shows enlarged liver and by my symptoms of liver pain burning hands and feet .spider nevi bowel motility changed and itching is not good news .but the fibro scan result was normal so now im trapped in a big mess .im shocked the person who signed that letter would not even look at me .there is no way a fibro scan can give accurate readings on a person with this many symptoms .
Feeling lost and very afraid now . - British Liver Trust
Feeling lost and very afraid now .
Hi
I really feel for you. It took me a long time to be diagnosed. One consultant said it was muscular!! You could contact pals at the hospital , they might be able to get things moving for you. Love and hugs Lynne xxxx
I feel so afraid my hospital already has a bad reputation and im so scared about going there now .i know i should never of drank at all in my life i never knew the risks . I have had arthritic pain for a few yrs now didnt know the cause now i know that it was alcohol causing that too .its poision to all parts of the body i never knew . Last night the pain in my thighs was unbearable .i worry if i have advanced chirrhosis i cant have any pain rellief for that either and im going to suffer very badly .
Hi
Why can't you have pain relief? Being addicted to alcohol is an illness and you need treating with respect. Have you got anyone who can go with you to pals or your Dr to be an advocate. Love and hugs Lynne xxxx
I have not touched alcohol since xmas 2017 and never will again. how can i take pain relief with a liver condition ?. no not really got support husband is busy working .
Hi
You have done really well.
My consultant said there are certain ones you can use. I have Nash caused by meds but my consultant said I can take nortriptyline, zomorph and oramorph. Love and hugs Lynne xxxx
I'm am so sorry to hear of your condition..so sorry. Drawn out fits the suffering and not knowing perfectly. Its seems like you need to take your issues to a higher level and get these guys jumping. Here in Canada we have what's called a patient advocate who WILL get them doing their job ànd give you answers. Let me know. In thoughts, heart and prayers
The whole thing is torturing me now physically and mentally .my family dont understand either which makes it worse .im getting pain more by the day and itching now too.im scared something terrible could happen like bleeding or confusion .my husband said to me you cant have alcoholic liver disease your not an alcoholic .but i told him they call it that because if you drink more than the 15 units thats the cause . Not nafld or autoimune disorders unless you have those as well and did not know . He never thought i was a massive drinker but i told him small amounts add up on a weekly basis just 2 bottles of wine in a week is 20 units so thats over the limit .and i did read that women are effected easier than men . And you can have other issues that make you more suseptible to liver disease too .
You definitively weren’t an alcohol with 20 units a week, and in any case you stopped over a year ago.
Well i may have drank more in my 30s tho maybe around 25 / 3o sometimes . But i drank for a lot of years about 18 maybe and i know i dont drink anymore and never will again but i doubt the damage is already done so its too late my liver is enlarged and iam in pain my bowels are messed up and i have spider nevi and burning blotchy hands .so im in a mess basically and my drs have managed to make things worse instead of helping me .
Never say never, but from what you’ve said, it’s not a huge quantity of alcohol. And why say it’s too late? You’re clearly very stressed about your health which in itself is unhealthy. Is there nothing you can do to take your mind off this worry as it’s not helping you at all.
Well it was a large amount for my liver by the look of it and i would give anything to go back in time and live a t toral life . My whole body is spoilt now i feel a fool for not acting yrs ago and getting a scan on my liver sooner but no one warned me i know that sounds nieve but its true . I used to like shopping but now i hardly go out only if i have to food shoppings not the same if you know eating is uncomfortable as you cant digest properley anymore . My pets do relieve my worry a little and my cat and dogs help a bit too . I used to enjoy manual work but now im in pain so lifting is not good anymore .i enjoy listening to the radio too .i guess im still in shock this all crept up on me so silentley .
Hi
My consultant told me if your liver is enlarged it stretches the capsule around it which causes the pain. Take care. Love and hugs Lynne xxxx
Yes thats what i thought irs really bad sometimes and also pain round the back in right shoulder area very distressing and makes it as you cant lift or move as well . Would not wish it on my worst enemy . If thats what alcohol does for you it all needs burying in a deep hole in the middle of a field dug by a jcb . Poison 💀 the devils brew 👹
Hope you put all your worries to rest and are fine now and don’t need this site. Did you find out what caused your symptoms, I’m the same.
Hi,
Maybe you could consider contacting PALS (Patient Advice and Liaison Service)?
There is a PALS department in every hospital and they can answer and investigate your concerns
nhs.uk/common-health-questi...
Best wishes
Trust1
Thanks but after the nasty uncaring letter i recieved from a so called heptologist who i never even met i feel im not wellcone .i did mention to my gp a couple of weeks ago paying to see a private consultant in birminham .i cant go on like this much longer if im itching i may turn yellow next .and the fibro scan result has just made it all wiorse .if my fibro scan result was correct i would not have any symotoms at all my hands are burning as i hold my phone now .
PALS will be able to investigate all your concerns about your care and any issues with the doctors/ medical team.
If you have medical concerns right now, we would suggest you try to see your own GP today.
Best wishes
Trust1
I suffered with terrible pain in my liver area, some doctors like to say that the liver has no nerves and thus cannot cause pain which is not true as the liver is surrounded by a sack and if swollen can hurt . The pancreas can also swell after alcohol abuse. It has taken two years for my liver swelling to reduce, at one point i was up A and E everynight for pain relief every other night for 2 months until my doctor finally put me on pain medication. As lyn says the opiate family are o.k , zorromorth etc, i am on long acting morphogesic and it transformed my life. Obviously there is a potential for addiction, but you cannot be expected to live in pain and be tempted to self medicate again with alcohol. I would go back to the doctors and perhaps see someone else who will help, maybe say that you,ve been on this site and are speaking to
others in your situation. There is no reason for you to be in paim.
Well the pain gets in my back to up by my right shoulder so must be the enlarged liver pressing on something .but i dont know if you could take those pain meds if your liver was in decomp mode ?. I would never ever touch alcohol again under any circumstances at all .ive never missed it once since quitting .i dont think the liver will shrink will it ? .not sure how it works .my drs are awkward last time i asked for pain relief they told me ibuprofen which i believe is totally unsuitable in this liver issues stuff .
That bit of pain sounds on the right sounds like a Gallstone, You really need to push them, you can ask to see different Hepatologist too, don't be fobbed off you need to get it sorted, write everything down so you remember all your symptoms, best of luck
I dont have gallstones gallbladder was clear except for 2 small polyps but no gallstones .
Hi there, I really understand what you are going through, I allowed myself to panic a few weeks ago, which brought on my sleep apnoea in a big way. I felt so alone as I have to find my own specialists here in Spain and to find one that speaks English and nearby was a long drawn out process of trawling the internet. My Gp is lovely but miles away and with the Spanish siesta time ( everything closes at 13.30)hindering my visits it felt I was doomed to suffer alone. Then I found this site and found out that I am not alone, like me other people have the same problem. This was a Eureka moment for me, knowing that I can come here when I get down or deflated and from that moment I began to relax a little more. The pains in my shoulder and back are sometimes unbearable but Never, I repeat Never take any medication without consulting with your GP.
As for your Gp you must be strong and insist they give you a referral to a specialist in a reputable hospital /clinic, it's your right to see someone you can trust. If your Gp refuses then complain to the receptionist and insist on seeing someone else.
The help is out there but it's just a case of finding it. I did eventually go back to my Gp armed with my notes(you have to carry all your own notes, scans etc over here) I also wrote a long list of questions which had not been answered by my specialist, including information about transplants and even how long she thought I would live.
She eventually phoned my specialist and informed him of my concerns. He was quite surprised I hadn't been so upfront with him and he said he will be glad to see me at my convenience.
Be strong and insist on the help .Sending love x
I know this is an awful situation to be in and even worse could have been avoided liver disease is a loneley place but loveley freindly people on here shame we were not chatting under different circumstances . I feel of all the diseases to get this is one of the most horrible because of the limitations of support and undetstanding and also shortage of drs who understand liver disease and how to diagnose and help treat it .i mean a liver enlarged on a scan can mean a multitude of things from easily corrected to deadly. And the fear attatched to all of this is just paralysing .one min your lifes going along niceley then you get a pain in your tummy and find out youve been carrying a timebomb inside you for years . A lot of other health problems can be sorted with medication or minor surgerey but this is not the case . I do think more needs to be done to roll out more detection available for liver disease after age 30 maybe lives would be saved .gps could have more advanced blood tests and fibro scanners in there surgeries for early detection .and more warnings about alcohol missuse and some one needs to stop this supermarket promotion of toxic poision its not a good deal if it damages your health to the point it cuts your life expectancy in half half and damages all your internal organs but no one puts that on a board next to the latest offer on the wine isle do they ?. How many people are walking the streets not knowing they are carrying a damaged liver inside them ?.
Very true. And in Spain a decent Rioja is €2 a bottle. Looking back would I have listened more to advice to give up drinking? The honest answer is No probably not. I know the risks of smoking yet for all the nasty pictures of lung disease on the packets, I still smoke( this is at the moment as I do plan to quit which I know will be harder for me than giving up wine)
I have always been a positive person and despite my wobbles, I am determined to live life to the fullest and look forward and not dwell on what I should've done.
Keep pushing for the help you need and once you have great support from a great gp I think you will feel more confident about the future.x
I only smoked as school girl got a bad chest stopped for good. They should put pics of liver disease on wine bottles and shelves i know i would of taken notice .the thought of having my life cut short is so unbareable i look at face book see my school freinds having fun and here iam in a mess itching and in pain .i would not wish this on my worst enemy ever . I get very tiered quickly so i do manage to sleep at night then wake up and remember the mess im in its all so horrible .
Why aren't you out with your Facebook friends? Ok you can't drink alcohol but you can still go out and join them. It sounds like it would do you good☺ I too get tired and with sleep apnoea to contend with I am lucky to get 3 hours max but nothing will stop me from carrying on a normal life.
There are people with a lot more debilitating diseases than this and people do carry on with life. It's a precious thing life and we should enjoy every minute of it, just without alcohol. I hope you contact your gp soon and discuss your fears and worries.x
I went to the cinema for my birthday at the begining of the month with my loveley daughter i enjoyed that . I live miles away from my facebook freinds i live out in the sticks so dont do a lot .i cant go to far incase something happens .i want to enjoy the easter sun a bit eat some easter eggs at home .xxx
Maybe you could organise an afternoon tea at yours and invite your friends and of course your daughter.I too live out in the sticks and up a mountain so I know how you feel. x
She will be over for her easter bunny and egg no doubt i got her some easter pjamas and a cuddly rabbit too for a treat bless her .she may be 25 but always my little girl forever what ever happens in the future .ive always lived in the country side all my life x.
She's a lucky girl. Have a great Easter and hopefully some sunshine. Take care.x
Okay i will try you have a nice easter too🐇🐇 🐇🐣🐤🐥xxx
Seems your doctors are saying you do not have a liver problem but you are not willing to believe them!
I was/am an alcoholic, what you drank in a week an alcoholic drinks in one evening!
Your diagnosing yourself from what your reading on the internet.
Listen to your Drs.
They are the ones that have all the test results that indicate your livers healthy.
You have a very good Dr if he refuses to do a biopsy on what appears to be a healthy liver.
Diagnosing someone from a fibroscan and an ultra sound and basic blood pannel is not a reliable source especially if the patient is exibiting symptoms before the tests were done .i have been reading some of your old posts and you know for a fact a fibroscan result does not rule out chirrhosis no good dr would diagnose something based on a fibroscan . Also going from being normal and functioning fine to not being able to empty your bowels and digest your food and itching and bad pain in your liver speaks volumes i would say i have been warned by people who are in contact with liver proffessionals that iam being fobbed off and need to get a second opinion even if it means paying and travelling .if i was not ill i would not be on this site i would be out and about enjoying my life not suffering and worrying liver disease is hard to diagnose correctly and most gps are very limited on liver issues . If you are a child pugh A score and compensated you will not have experianced the symptoms im having now . You found your chirrhosiss before you decompensated i did not by the look of it . This is a horrible situation iam in i cant do the work i loved so much due to pain now .
Hi, well done on giving up the alcohol. Do you eat healthily, exercise regularly and are you overweight? The reason I ask is because I didn’t and ended up with liver issues. My liver was enlarged and after switching to a healthy diet and regular exercise it went back to a normal size and is healing. Switching to a healthy lifestyle will help, and don’t take no for an answer with your Doctor. You are clearly worried something is wrong and deserve to be treated with respect and empathy, no matter what.
Let us know how you get on, Owlie
Yes iam overweight and yes i exersize but now due to my pain and symptoms this is not as possible now .i have had 2 ultra sounds sevral months apart and my livers still enlarged even tho im not drinking so im guessing its the alcohol damage thats enlarged it . The burning in my hands is awful and my bowels dont work without lactulose .my drs not going to leave me to die im going to pay and travel if thats what it takes to get a diagnosis .if i were a dr and my patient was distressed i would get to the bottom of it not fob them off . No body cares anymore your just a number .the way this is going i can see this ending up very nasty and a misdiagnosis case being persued .
a liver biopsy will not kill you
Well my gp said if they hit a vein your a gonner .i have read good and bad storys about biopsys it all sounds painful and frightening .and what pain relief is available afterwards i have a lot of pain as it is .maybe a good consultant could find a way to avoid this .
I was forgotten about by the gastro consultant even though my fibroscan showed severe fibrosis. I also had normal LFTs. I searched on line for a teaching hospital that was within travel distance and had a specialist liver unit. Under chose and book on the NHS your GP can refer you to any hospital of your choosing. My GP did this without question because he too was confused by the fact that my bloods were all normal. I chose well and 6 weeks later was seen by a Prof. My GP had asked for a 2nd opinion. OK your hubby has to work but he is going to have to take a days holiday when you get this appointment. I had a fibroscan the same day before I saw the Prof. It was showing now I had cirrhosis. However when I went back in March I saw a different consultant. He was not convinced I have cirrhosis. Next Tuesday I am having an ARFI scan.. This is a specialised scan for people who have liver problems due to NAFLD. I was told to go on a low carb diet by the Prof and it works. Due to having severe arthritis I can't exercise, but contrary to popular belief you can still lose weight without exercise. Its quite a complex diet initially, it took me a week to prepare. I removed everything that had carbs in, even tins of the well known tomato soup! The diet reduces liver fat as well as body fat. As others have said ask a family member to go to the GP with you. It sounds like you have health anxiety so this could be preventing you from putting your case across. You have stopped drinking now so well done. Losing weight is your next challenge. Plus it will show you are fully engaged in sorting your health. You need to ask for the second opinion as you wish to find out why your liver is enlarged. If GP says no, see a different one. Hazelx
This has been going in circles for quite some time now. While noone can tell you your symptoms are not real we can tell you and have told you that they can be caused by a myriad of things. So far you have had every test aside of a biopsy conclude that you dont have liver disease. I think whats happening here is that the doctors are getting fed up telling you that. I have suggested along with many other members that you make some strives to try and figure out what else might be the culprit of your symptoms now that liver disease has been ruled out. But yet you refuse to accept it can be anything else aside of liver disease. More so your convinced its decompensated cirrhosis. Which again has been medically proven to not be true very conclusively. Your blood tests are normal. Your ultrasounds are clear of any advanced disease. And your fibroscan is an amazing score below 5 kpa. Its not liver disease! Listen to these doctors. The only thing left would be a biopsy but I can underatand a doctors reservations to perform one as
A) there is no testing warranting it whatsoever and
B) They likely assume that even when it comes back negative you will still be convinced its your liver.
My dear your not doing yourself any favours by not looking into other resolutions to your health problems. Any memeber on this site would be over the moon to have a doctor tell us the fantastic news that you keep receiving that its not your liver. The doctor you talked to when you called said in plain english " your problems are not being caused by your liver". Take that and check it off the list. These posts keep going in full circle. You need to move forward and get this sorted out. Thats starts with you not going back to the beginning each time as if its your first time posting. Progress has been made. Liver disease has been ruled out. Congrats on that and focus your attention where it belongs and that is on figuring out what is causing your symptoms.
I care for you and so do the many other member who have spent many many hours talking withbyou and giving you support. But its incredibly frustrating to have those efforts ignored and to see you reboot back to the beginning again as if it all never happened.
I could not have said it better!
Indeed, for all the tremendous good this forum offers, there's sometimes a kind of 'compassionate collusion' with health anxiety (which is itself often rooted in guilt about a previous lifestyle). Your rational kindness here is commendable and it does not deny the very real torment some members feel but seeks to alleviate it, whilst expressing respectful frustration. Best Chris
Anxiety and depression can do funny things to you, i know first had, please see someone to help with this. I'm no Doc but you dont have liver disease ... you would.know if you did!
I do agree Chris but I think you meant to get back to the original poster. Take care. Best Chris
100% Agree - MOVE ON and stop searching online to solve your "symptoms." i have had Cirrhosis for 30+ yrs and your symptoms are unlike anything i have experienced. Use the medical system you have access to, please.
Yes thats right
Anxiety and depression can do funny things to you, i know first had, please see someone to help with this. I'm no Doc but you dont have liver disease ... you would.know if you did!
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Yes anxiety and depression can do funny things but this physical stuff is not nice i spoke to a freind of mines mum last night told her about my story she is an ex nurse . She said theres something badly wrong with you when she examined my hands . She said there the wromg colour and burning and shiny . She also said that i did have spider nevi on my chest .she also said my bowel changes were consistent with a bad liver .she said there are drs and there are drs .only see the best . She said no wonder your worried you need 2 sorts of help this is a horrible situation . She also said in her nursing days she saw many chirrhosis patients she said the men where hit hard with weight loss and acities more than the women.i hope your keeping well chris and enjoying the warm weather .
Countrywalks, you say you have pets, you have a cat, dogs, they love you unconditionally, and look up to you.
You owe it to them to look after yourself and be there for them. Immerse yourself in their care, read, learn more about them, there is always more knowledge to acquire; and in the process this may also help to stir your mind away from your constant worries. Your animals will repay you in their inimitable way. Like only animals can.
Anyway, you should have realized by now that you do not have liver disease, lucky you, this should make your heart sing.
BUT, you seem very stressed, and stress affects every single part of our body. Stress will hammer your immune system which in turn may present you with weird symptoms.
So Countrywalks, maybe now is the right time to be totally honest with yourself? Deep down you probably know what really Really ails you....
Have you got a friend you can trust, have you considered counseling?
Now go give your cat a hug and stroke your dogs for me. Or better, take them for a walk.
pigeon.
I dont know how they do things out there but here in Canada a liver biopsy does not kill you. In fact it's quite common.
I didnt realize before you were Canadian! That makes 5 of us now. Yea Im keeping track lol 🙂
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