Long winded, please be patient, I am t... - British Liver Trust

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Long winded, please be patient, I am terrified

28 Replies

Hello,

I am a 57yr old female, who has worried about my liver health for years, and sporadically sought the attention of my GP. I am an ex Nurse, and as the old saying goes, a little knowledge can be a dangerous thing - especially true for us because we tend to think every slightest ache or pain will see us gone within a matter of days. So a "health anxiety" I think would be fair to call it, is (and has been for years) a contributing factor.

Always enjoyed alcohol. Have never had a drink during the day other than holidays and high days, but have drank at evenings for years. Always wine. Occasionally a spirit and tonic. But (knowingly and disregarding at the same time) more than I should. Not every day - have worked shifts for a significant period of my life, and have never been somebody (unlike some ex colleagues) who has needed to come in and have a drink after a bad night before I go to bed at 9am!

My beloved mother died 2 years ago, I spent years of my life looking after her as best I could, running back and forth between towns, and being with her until her death. I drank heavily after she died. Not for long, because there was lots to do, but for a couple of months there were maybe 3 days a week I would drink very heavily.

Since finishing work, worked for 15 months in pub 4 nights, then 3, then 2....but those days were alcohol free. I have also had several episodes of abstinence.....couple of months, 7 weeks, 4 weeks several times, currently on 3 weeks.

First raised discomfort right side upper quadrant ;to my GP in 2008, terrified. LFTs were raised - he said not significantly so, but enough to indicate I had been drinking. USS showed fatty liver. Had gastroscope NAD. GP wasn't concerned. I stayed off wine for some time, but then....Christmas, or a bad day or a milestone in something else so needed a reward.....and it all began again. I had a further USS 3 years ago showed some echogenicity. GP wasn't concerned. I also had a CT thorax and abdomen with contrast because I developed some other issues on the left side including vile diarrhoea immediately after eating. The message from the surgery was everything was fine. So my GP has put issues of discomfort that I raise with him as IBS / Diverticular disease / Fibromyalgia.

I developed a bit of a twinge about 5 weeks ago, ignored it although wasn't drinking every day. 30th September decided to stop drinking for October, but over this period of time my discomfort has worsened. My issues currently at the moment:

Deep discomfort at the bra line to my back, literally against the spinal column where the bra would fasten feels sometimes like a dull ache, or an itch, I sometimes have to stick a pencil down or find a door corner to scratch it - occasionally it feels like a hot rod is being stuck through it, I can't get any comfort, but this tends to be more in the evening. Sometimes it just feels like a stiffness.

Discomfort at ride side in line with armpit, and around to sternum, just a dull twinging ache. That same area sometimes feels warm to touch. If I push into that side I sometimes hear / feel a popping sensation like a big bubble gurgling and moving around, but just get a generalised discomfort through the cavity only when I press.

Nausea and some dizziness (both new) and a funny taste to mouth. The nausea and dizziness make me feel totally off kilter. The dizziness sometimes (this sounds bizarre) makes my face feel strange and up my nose feels tingly.

Burping and trumping (sorry). The former quite frequently the latter far more than normal but not like hourly lol!

Hot flushes - about 4 a day. I went through menopause 10yrs ago, flew through it with no side effects, no flushes, no medication. But past couple of days I have just suddenly felt hot, face burning, only lasts for a minute or 2, then disappears. No night sweats - no sweating at all. Last one was around 4am, woke me, threw the duvet off and hey presto, within a minute or 2, I was back to normal.

General aches down my back right sided, I wondered if this was kidney?? I could literally draw a line right down my middle and everything that I feel would be in the right side.

I don't look jaundiced, but who can tell, as i have read it can be so many different appearances, and I tend to have a slight tan as I just love to sit out in the sun. My urine is a pale lemon colour, stools are normal colour(but as before I have always had some issues).

I am overweight. Am beginning on a low carb journey. But last night for example I got the most awful feeling of bloating around my belly under my bra line, had to take it off to relieve it, but I have lost some weight - only 7lbs in 3 weeks, but I assume this is mainly due to not drinking and beginning my low carb journey whereby last week I cut all added sugars out, this week am cutting wheat.

No swelling to ankles, I have short fat stumpy legs (inherited from my Dad) but definitely have ankles, wrists etc.

I have some broken veins to my face, edge of my nose but again I put this down to menopausal changes......rightly or wrongly.....had lots of hormonal problems when younger, endometriosis, and hirsuitism.

I have tried to make an appointment for my GP but the next is 6th November. My husband just rolls his eyes, here we go again.....and if I state I don't feel well, just asks have you made an appointment yet! Grrrr! I can't tell anybody else - there is only my brother and I, and we are "estranged" more or less, and I don't want any of my friends to judge me.

Sorry this is so long winded. I have spent days reading some of the posts on here, and have had tears in my eyes at your bravery - all of you, whether you have a health problem or are / have been supporting a nearest and dearest through poor health. I am working on being patient and trying to get my self back on track to just doing my normal daily stuff. I try to distract myself as much as possible, but 6th November is a long way away, and I just hoped that by posting my worries, my fears, some of you lovely people may also help to keep me distracted as well as give me any advice as to what I can to improve things.

I haven't taken any analgesia because I am concerned that they would only further punish my liver, but about 7 weeks ago I had a pinched nerve in my neck and the GP gave me Naproxen which I did take for probably the first 10 days until the acute pain subsided. I do take a Nexium sometimes which does help a little.

Thank you for taking the time to read this, that in itself is much appreciated and doesn't make me feel quite so alone. Bless you all xx

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28 Replies
Huggy7614 profile image
Huggy7614

Hi,

Yep, read to the end!! You are not alone, and my only words of wisdom are that worrying about things won’t make anything better!! Yes I know, my partner gets so infuriated with me too!! 😜😜

I’m afraid you’re far more qualified than I am to consider your ailments, but, as far as liver conditions go, sounds like a bit of a gipseys warning!! Eat healthily, no salt, fresh foods, blah blah blah, no/minimal alcohol and hopefully you will turn the corner. Pain relief I was always told paracetamol - and from about day 4 post transplant that’s all I had!!

Please don’t fret, appt in nov is not that far away, and keep on here, lots of good advice to be found.......just not from me!! 😝😝 Andy.

in reply toHuggy7614

Thank you Andy x

AyrshireK profile image
AyrshireK

One major things sprung to mind in your post - the earlier hormonal issues, endometriosis, and hirsuitism. Were you ever tested for PCOS (Polycystic Ovary Syndrome)? A lot of your symptoms coincide with symptoms of PCOS and PCOS can also cause liver inflammation.

I believe one of other members ended up with end stage liver disease and subsequent transplant which was initially thought to be alcohol related but ended up being as a result of PCOS.

Just a thought, in no way medically trained, your post just jingled some bells.

Katie

Huggy7614 profile image
Huggy7614 in reply toAyrshireK

How on Earth do you remember this stuff Katie?? Huge respect!! 😉

AyrshireK profile image
AyrshireK in reply toHuggy7614

Well, the member I am thinking of is a very regular poster so quite familiar with her story. PCOS can lead to diabetes/insulin issues, hormonal issues, fatty liver and all sorts of other complications.

Laura009 profile image
Laura009 in reply toHuggy7614

Katie is the medical version of Encyclopaedia Britannica !!

Huggy7614 profile image
Huggy7614 in reply toLaura009

😝😝

in reply toAyrshireK

Thank you so much. No I haven't been investigated for that, although my ovaries were looked at in the CT and nothing abnormal. But I will mention it to the GP x

DL1962, I'm sorry for your loss of your Mum, and the difficult time you went through being pulled in different directions. The bell you jingled for me was with your low carb diet. You'll know better than I do about ketosis: is it a possibility that this has irritated your liver? Best wishes

in reply to

Thank you, I am only just starting on it, so don't think so, I have had these symptoms before I started x

The term you used 'health anxiety' was I believe a pretty accurate self-assessment. You have to be either unlucky or work really hard to reach the point of irreversible liver damage & nothing you described is suggestive of this. In all likelihood you are just worrying excessively after reading horror stories on the forum. A FibroScan to check for scarring would be worth getting to put your mind at ease.

Fatty liver is pretty common & as long as it's not accompanied by inflammation (NAFLD) it's considered benign. Lose weight gradually (rapid weight loss can make fatty liver worse), exercise regularly, eat healthy, avoid alcohol & other liver stressors & I'm betting that any liver damage you have will repair itself.

Based on some of the things you wrote you could have other health issues which need identifying. I had health issues that I mistakenly attributed to my liver because some of my symptoms were typical of liver disease but it turned out they were caused by other things. Stop worrying excessively & get yourself checked out. A FibroScan should settle whether you have serious liver damage (& I'm betting you don't).

in reply to

Thank you. I know worrying is our worst enemy and I am a champion in it lol! But I do believe that I can't worry the extent of the pain into my head....as I type, the burning rod pain I described through the middle of my back is pretty severe, and it has literally come on within a few minutes.

I shall ask about the fibroscan, thank you x

Hi DL1962

Firstly please do not apologies for explaining your symptoms fully as I truely found them interesting to read!

If I'm being perfectly honest other than you like the occasional drink I felt like you were describing most of my symptoms which I've been under investigation for around 18 months or more. All I can advise is please try not to stress until your GP has carried numerous blood tests! You maybe required to undergo various scans, this again can take weeks or months for an appointment to come through , then theres the waiting for results. which I've already undergone and shall be again over the next 3 months due to a large change in my latest monthly blood tests.

Please be patient and try not to stress to much as your GP appointment will soon come around ! Worrying only causes more stress which alone is not good.

Keep focused on eating healthy , exercise and drink no more alcohol is my advice.

I've lost 3 stone since my problems started so be good to yourself .

I look forward to hearing from your again! PM if you want to chat privately.

Love Trish

in reply to

Thank you so much Trish for you response. It is so hard to think of anything positive whilst feeling so much pain, I try to do something and then feel so much discomfort I end up stopping. I hope you are getting somewhere with your investigations, it is a horrible waiting game! Thank you again x

in reply to

All I can say is, hang on in there and keep focused! If the pain is unbearable then you might want to call your GP's emergency line, 111 for advice or go to A&E !

My pain has been bad at times but I do have some medication now for an inflammed Esophagus which flares up out of the blue causing horrid pain through to my back. I've now found eating half a tin of rice pudding from the fridge has helped towards relieving some of the pain. This was found by fluke 2 weeks ago when I had another flare up and I gave it a try due to being out of Yoghurts and Actimel which I normally try first!,

All the best my friend

Trish

in reply to

I am trying to get into a low carb way of eating so cold rice pudding probably won't cut it for me, however it sounds delish! Totally off topic tho.....rice pud and semolina are so thin when warmed up, not like in my childhood!

This pain intensifies when I am sitting down, so I find it very hard to get comfortable, it just feels like a hot rod being put right through at my bra fasten level, and feels "stiff" when I move. Moving around it isn't as bad, and it doesn't disturb my sleep, so I am fortunate.....although a long term insomniac from a lifetime of shifts lol! But it doesn't wake me from what little sleep I do have.

I'm glad you have medication that helps to ease your pain, that helps such a lot.

Take good care and thank you again x

in reply to

Hi again

For just over 18 months I've been on a low carb /fat healthy eating plan! I have to take actimel to replace the milk I dont take. The rice pudding side of things has been a No! No until the recent flare up plus its notmpart of my healthy eating programme! However I've only eaten one tin a week ago which did the trick and eased my discomfort so I'm now a happy bunny! The hot poker pains have gone until my next flare up

Bye once again

Trish

P13jne profile image
P13jne

Hi DL1962 my god you’ve been going through hell! I read your story to the end, as you say a little knowledge etc can be worse as your imagination has a ball trying to decipher what’s going on.

Try to stay positive until your appointment. It’ll be here before you know it. In the meantime, come on here and chat, a problem shared is a problem halved.

Jane xx

CocoChannel profile image
CocoChannel in reply toP13jne

I was going to say, that’s a few tough years, DL. Most of us would be feeling the strain.

Hopefully, your GP will find nothing wrong that a few lifestyle changes such as losing weight and exercise won’t address (talking from positive experience). 👍

in reply toCocoChannel

Thank you CocoChannel, I am working on my weight, slowly but surely. I have no desire to drink alcohol at all....just looking at the bottles stacked in the supermarket earlier (only because I was crossing the aisle lol!!) and I found myself saying "filth" out loud lol!!

I don't think I can do much exercise, I feel "stiff" throughout my core, in fact fell off physio table last week because I was so stiff I couldn't turn myself round 🤣🤣😥😥. Plus I have a really dodgy left hip which really limits my ability to walk far - I have a JRT and am more than happy to walk for miles with him, but 2 is really my maximum at the mo. And of course, the vicious circle, I know that if I saw my GP about my hip, the first thing they would say is to lose weight.

I am trying - thank you.....you mention speaking from experience, that is very positive for me! Thank you x

CocoChannel profile image
CocoChannel in reply to

Walking two miles a day is nothing to be sniffed at. It depends on your weight, of course, but that’s around 180 calories a time.

How dodgy is the hip? Anything the physio you mentioned can sort as opposed to a GP? I could go on about my dodgy bits being fixed by a physio ....🙂

I think you might be surprised how much exercise you are able to do once that weight starts coming off.

in reply toCocoChannel

Thanks again Coco......oh it is dodgy! I can feel it right from the socket down my femur.

But I will keep going with my new way of eating, and increase the walks as and when I can.

Thank you so much x

CocoChannel profile image
CocoChannel in reply to

It’s probably bog standard advice, but I also found keeping a food diary was a huge help. I’m male so am supposed to have 2500 calories a day. When I started dieting, I cut this to 2000 and wrote down every scrap, even cups of coffee (with milk). To keep within 2000 takes real planning*. No room for any junk and that’s also when I realised (with regret at the time) the two glasses of wine a day had to go.

* A 2000-calorie diet (I think it may be less for a woman ☹️) not only takes planning to avoid being hungry, you need to be careful with nutrition. I saw a dietician thinking my diet would give me scurvy. There were a few adjustments made, e.g, add Vitamin D tablets, but other than than all was OK.

I’d get this hip sorted if you can too. Must be annoying if nothing else.

in reply toCocoChannel

Lose weight first which I hope will have a positive effect on both liver and hip! Wine now firmly knocked on head. Tomorrow will be day 22 and I know it is early to feel proud, but actually I feel totally different about it this time.

The hip is the price I paid for 35yrs on my feet all day, in my latter job walking around 7 miles a day.

in reply toP13jne

Hi Jane, thank you for your reply. I am trying to stay positive and I hate my mind because it truly runs away with me. But I sense that this is very real and i only have myself to blame. You are right, GP appointment will be here before we know it! thank you x

Hi

I really feel for you and I've read your post from beginning to end. I'm so sorry to hear about your Mum. You are in my thoughts and prayers . I have pain 24/7 due to many conditions. Please try and stay positive, you will get there and stop blaming yourself. Come in here anytime, everyone's great! Pm me if you need to. Love and hugs Lynne xxxx

in reply to

Hi Lynne, thank you for your kind words, and also for all the lovely warm welcomes. I am sorry you experience pain so much, you must be absolutely exhausted you poor thing. I have just had a lie down and when I lie, no matter which side, I have no pain at all which amazes me.

I hope you get some comfort soon, and your doctors find something to lessen your pain xxx

in reply to

Thank you so much for your kind words. Lots and lots of love and hugs Lynne xxxx

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