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British Liver Trust
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How can I get rid of this pain?

Hi

How are you all doing?

I've got nafld/ Nash with some fibrosis. Nurse said that this doesn't warrant the amount of pain I'm in. Bloods show very high inflammatory markers, thinks it could be lesions from when I had my gall bladder out 32 years ago or sphincter of Oddi. My pain is getting worse and worse, it even sets my teeth on edge!! It just feels like my gall bladder pain , it's been going on for at least 2 years if not longer. Any ideas of how I can reduce the pain. I'm on very doses of morphine as well as other meds. I really don't want to up my meds as they can't be doing my liver any good. The pain has me in tears every time it builds up. It's there all the time and builds up to crescendo. Sorry to rabbit on, I know there are plenty of people worse than me. You all take care. Lots of love Lynne xxxx

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Hi Lynn. Think your on the right track getting checked out. Got my scan in couple hours. Really worried ☹️. Hope u get sorted x

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Good luck with your scan. Please let us all know how you get on. Take care xx

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Hellohaa! Scan clear, got to go on tv (camera) up my derrière. Really not looking forward to it. Nothing to be concerned about from tests I've had. How are your pain levels now, any better ?

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Not much better, thank you but I will get there!! How are you? Xxxx

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Less stressed and had to change my diet which is starting to help. To cut a long story short they gone from saying gallstones to they think my colon not working properly after going scan, bloods etc. Not the first nor probably the last time I've been told I'm full of 💩 lol

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Sorry to hear things no better really. You got a backup plan, like doctors or herbal/ psychological help?

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Thank you. Drs have tried everything, thank you. How are you feeling? Xxxx

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Hey Lynne,

Is there any time when it is less noticeable?

Is it that you need to change pain killers? I think with some meds when you have been on them a long time they become less effective.

Perhaps alter the timings you take them? Perhaps the timing between taking pills and eating is altering the way it is being absorbed in the body.

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Yes, you could be right, thank you. Just so worn out now, it's just like my gall bladder pain was. Take care xxxx

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Sorry Lynne you're in so much pain. Where is the pain? You sound like me! I can't remember but have you had the transplant?

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The pain us around where my gall bladder was. Worse than gall bladder pain. Not had transplant. Thank you for asking. How are you? xxxx

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Not great but I think I know my problem and I may have to get a surgery done privately because GIs do not acknowledge the problem I have.

Have you had any scans? I really hope they find the problem!xx

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Hi

I'm due a hida scan on 30th October to see if any lesions or sphincter of Oddi can be found, it's hard not sleeping isn't it?

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It's been going on over 2 years!! Please take care. Lots of love Lynne xxxx

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2 years! Mine has been going on for nearly a year. It is hard. I've been told I have bile reflux but apparently that doesn't hurt. I've read plenty of medical research papers and watched medical lectures on YouTube and bile reflux gastritis hurts very very badly! There's also plenty of groups for it and medications which do not always work. When I saw two GI doctors they both denied it hurt and they said there's no medication for it. They were pushing to change my acid blocker and that has no impact on bile reflux. There's a surgeon that even does surgery for bile reflux in London. In fact there's a surgery for bile reflux so if it wasn't a problem why would there be medications and surgery for it? So I'm going to see my liver doctors in November and take all the evidence with me and if they do not want to be part of this journey then I will have to do it without them. It is a bit similar to a bariatric surgery but without decreasing my stomach size. They move the duodenum so the bile flows down rather than coming back up into the stomach.

I really hope you get some help. Does this pain happen when you eat? You'd think we have enough on our plates!

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It happens whether I eat or not!! I had surgery for GERD , it's called fundoplication, done on NHS, think I might have leisions from that surgery too but that's just me!! The surgery did stop the reflux. Hope you feel better soon xxxx

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Good luck with your scan tomorrow Lynne :)

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Thank you so much. How are you today xxxx

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Hoping you will have some good news tomorrow.Guess i am trying to summon up the nerve to have an ultrasound scan...I'm a wuss and I know I cannot deal with any bad news,lol.

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Thank you so much. Hope you get your scan done soon xxxx

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Hi

Had scan. They inject tracer into your vein, go on machine for about 40 minutes, come off, have some very fatty strawberry type milkshake, wait 20 minutes , go back on machine for 10 and then go. Not sure when results will be xxxx

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so hope you have good results xx don't like the sound of the milkshake since I have recently become vegan,lol.......i expect results will take about 3 weeks?

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Thank you. I will phone up this week to see how long they usually take xxxx

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Hi Lynne,

I'm sorry you are suffering so much, I hope they get to the bottom of this soon. Nothing worse than ongoing pain :(

Hugs,

Michelle xxx

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Thank you so much. I've just about had enough xxxx

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Thank you so much. I've got hida scan on the 30th October to check for lesions or sphincter of Oddi. Please take care. Lots of love Lynne xxxx

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Hi Lynne,

We are sorry to read that you are in so much pain. Can your liver team refer you to the hospital pain team? They are experts in pain management and can often provide some help.

Wishing you well,

BLT

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I have seen one person, got one to one on 23rd July and telephone consultation end of November!! Xxxx

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You can't wait till July, if there is no sensible contact through your liver unit, go to GP, I did this when I wanted contact with a nutritionist.

When I was in hospital I was reminded they don't give out medals for putting up with pain!

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Thank you so much xxxx

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Oh Lynn sorry to hear your in so much pain. Wish I could make your pain go away for you. Sending lots of love and prayers. Xxx

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Thank you so much . How are you? Xxxx

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I'm ok thanks gorgeous girl getting there but I don't seem as depressed as I was. I'm enjoying every day as it comes started baking again which I love. Also I decided to tell my liver consultant that I didn't see the point of me keep going every 6 weeks if nothing could be done so haven't been since July. Next appointment November and I've also got my appetite back as I lost mine but found a donkey's. How are you apart from the pain. Xxx

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Just feel rotten, sickly etc. Thanks for asking. Got to keep smiling,!?! Xxxx

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Hi Lynne

You really are going through the wars. Have you had a word with your g.p. about getting a referral to the pain clinic? The only reason I say g.p. is because where I live even my liver specialist wrote to my g.p. about a pain clinic referral he didn't make it himself. The cynic in me thinks it was more to do with whose budget the referral would come out of. Having said that you and I like many of us are dealing with more than one condition. A referral from your g.p. can cover all of the different issues in the referral as potential pain issues. Maybe if someone looks at you holistically as well as the specialist work they might be able to look at the possible interrelationships of you health problems and fingers crossed find you some sustainable respite from pain.

I over did it at work today. I was supporting a group and we were having an interesting conversation and I stayed longer than I should and let the meeting well and truly overrun.

I know what will be doing tomorrow. 99% chance I will be in bed until about 2:30 in the afternoon recovering. Combination of exhaustion and my back needing to be flat and supported. I will need to do some of my stretches but mainly resting. So if you feel the need to talk make sure you hit submit reply. I will be glad of the contact.

Take care and cuddle something warming but not too hot, see if it will help with the pain. I'm going to use my pillow as I can't use a hot water bottle or electric blanket.

Gx

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Thank you so much for your kind words. I'm already under pain management but thank you for the advice. I saw a lady a few weeks ago, I've got 3 one to one sessions starting on 23rd October and a telephone consultation to sort my meds out end of November. Could do with my meds sorting out sooner than that but at least I'm in the system!!! I use a hot water bottle, I did use one of those wheat filled a ones that you out in the microwave but I burnt my stomach on it as I made it far too hot!!, Please take care. Lots of love Lynne xxxx

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Hi Lynne

Thanks for getting back to me. I'm getting the strange sensations in my legs and left side that tell me I'm going to be resting a lot today. No choice as I know I'll feel ill if I don't.

I'm glad you are under pain management. I hope it helps.

The wheat bags are ok if you get them the right temperature, I often got them too hot. In the past I used them and if I made it too hot I used to wrap it in a hand towel until it was a safer temperature to put straight on. Dare not use anything like that now as sensations below my injury are not very reliable. I can feel frozen on my legs but my top half is warm. When I get my hubby to check the actual temperature of my legs they can be warm or even hot.

Have they tried hydrotherapy for you? The warm water might help you exercise and sometimes the warmth and the right exercise can help reduce pain. It didn't work for me due to my stupidity. They would give me exercises to do in the water. I tried to hard to do them and it meant I created too much pain at night for myself. If I hadn't have over pushed myself to quickly I think it could have helped.

I find the more discomfort I'm in with pain, the more trapped wind type problems I have, this gives me more areas of pain.

I've decided that the joke about over the hill after 40 is wrong. It might have got a little rough then but It was definitely post 50 for me.

Today certainly looks like cups of decaffeinated tea and peppermint tea to drink for me and reading my kindle, while resting in bed until about 2:30 don't ask me why but that seems the time it settles reasonably ok. If I'm good today ill be fit for a trip to meadowhall tomorrow. I promised my son who has autism we would go.

Have you tried yoga or meditation to see if it can help with pain relief? Just a thought. Mind you it gave me a giggle imagining myself trying to do some of the positions. I never did have a flexible back, even as a child I couldn't touch my toes or do hand-stands.

Gx

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Thank you, I was never very good at anything like that!! I will ask about hydrotherapy , though xxxx

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Hi

I'm really struggling with exercise as I've got fibromyalgia which is giving me pain all over, some days I'm in so much pain I can hardly walk, I just about manage to work part time but that's only cos work are very understanding. Please take care. Lots of love Lynne xxxx

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Sorry you had such a rough night. Mine was exhausting but fortunately the pain was manageable. Still resting. Had to move the pillow got too warm.

Ill be getting up about lunchtime I think.

Finished one story about to start the next. I'm just taking it easy today. Goes against the grain but better that than not being able to control my legs and certainly better than too much pain.

Gx

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Thank you. Sorry you had a rough night too. Please take care. Lots of love Lynne xxxx

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Had a lovely surprise my brother in law just popped round to cut my grass. I got up and feeling a bit better now. Hope you do soon.

Gx

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Aww, that's lovely of him. Glad you feel a bit better. Xxxx

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