NAFLD and Pain?

[kaytie456]

After many complaining about a pain on the right in liver area I have had a Fibro scan and was given a diagnosis of F4 Advised that loosing 10% of body weight is helpful and advised I will be seen in 6 months. I was also told that I scored better because I have advised them I’d been told 50 years ago I have an enlarged liver.

The letter when received gave the following information 16.1kpa 19% IQRMED + UKELD45 Childs Pugh a/5., None of which were explained but I goggled!

No questions were asked of me and I was unable to glean anymore information.

I have been unwell for years with this pain in right liver area and also another one on left at same level under chest area. Years ago I had an ME diagnosis for my range of symptoms including fatigue and tiredness, increased drug sensitivity and generally unwellness not unlike flu like symptoms. I am used to them but in the last 6 months the pain and discomfort in liver area is far worse ebbing and flowing every 24 hours endlessly. I am significantly worse.

The pain/discomfort is a deep ache it feels raw, inflamed and I get cold and jittery at same time. I can feel my pulse in pain area (although steady) and even in my head sometimes. I am very bloated at times and the discomfort is worse when lying down and yet I am still advised that pain is not “normal’ with my diagnosis. I would just be interested to hear IF it is true that I am the only person in the world with such symptoms because I very much doubt it. Just seems very odd to me that as my Pain has worsened seemingly with the liver getting worse that it is ‘still not’ that causing the problem? It is baffling.

[Millie09]

Hi kaytie,I'm so sorry to hear your struggling with this long term pain in the liver area , I don't have NAFLD ,but ARLD ,I have not really had any type of upper right quadrant liver pain ,only when I was overdoing it with alcohol consumption causing my liver to become inflamed.

I do know a few others on this forum mention the same thing with NAFLD ,they have said because the liver cannot feel pain as such as it has no nerve receptors ,it could be the Glissons Capsule that surrounds the liver itself ,maybe due to enlarged liver

May I ask have you been checked for problems with the bile duct at all ? I know I have some stones in the corner pocket of the bile duct that can cause raw pain like feelings along with nausea etc.. it was just a thought.

I do hope you get some answers and help very soon

Best wishes linda x

[kaytie456 in reply to Millie09]

Many thanks for your reply. Interesting re the Liver not feeling pain. Other checks like bile duct have been done and this has gone on for years its just now much worse. I am not sure I ever will find the answer however I was baffled at being told the pain was not the liver.

[Millie09 in reply to kaytie456]

Oh I see , so checks have been done on bile duct then. Yes the liver feels no pain ,only the capsule that it sits in .

Have you tried contacting PALS at your local hospital ? Maybe email them, explain what has been going on and your frustration at being in Constant pain and would like a second opinion maybe?

Just a thought.

[kaytie456 in reply to Millie09]

Thanks again - will bear that in mind at the moment I am just so confused my all the pain I get which I accept will never be explained however until today I have never heard that the Liver does not feel pain ...so already I am learning - thank you

[Millie09 in reply to kaytie456]

Most welcome. Fingers crossed you get some answers

[Wi-llow]

I have stage 4 Fibrosis and I also have the same pain in the area you described. I have learned that when I lean on the right side of my body, the pain worsens. I have made a diary of foods I eat, and check the fat, salt and sugar content which seems to activate it. I also find if I eat too much solid food it can aggravate the area. At times like this, I drink plenty of water, sit upright, and sometimes a glass of soya can soothe it. I also get hot and cold sweats which is odd as I mostly have a liquid diet. I do not drink alcohol at all, but I do find that fizzy drinks, and highly processed foods, which I rarely consume can have an adverse affect. I have no answers, but perhaps if you kept a diary of what you consume, and check for hidden fats& sugars, stay away from processed foods, and perhaps ate a softer diet it may help. Losing weight helps me, it is hard to do, but it does give give a positive affect for me. I hope this will help you, though it is probably best to chat to your GP/Consultant. Have a chat with your GP about your meds to see if anything you are prescribed or any herbal supplements you may be taking may be aggravating your Liver. As I am replying to you I have the'pinching' sensation to the far right side and this generally works its way to the upper middle left area. I hope this of some help to you.

[kaytie456 in reply to Wi-llow]

Many thanks for replying. I understand all the tips you have mentioned. Although I do need to loose weight and I am loosing, I do have a very healthy diet, I don't add sugar or salt to anything, do not eat processed foods and have not drunk alchohol for over 25 years. I even understand the comment about fizzy drinks I cannot drink them without getting bloated. They all make sense. I do have multiple food intolerances too. In a way its interesting to hear on other message that you don't get pain from the Liver because it the effects of drinking alchohol that first alerted me to a problem - I would feel so unwell from that area and its from that area that I get the discomfort/pain and yet suggested it is not 'normal' to feel pain from that area as GP put it. There are many puzzles to level of pain and unwellness I am experiencing which is now life limiting and even more baffling that the recent diagnosis does not give the answer eithier. Our bodies are a wonderful mystery. Thank you for your help.

[Yellowsydney]

Please look at the British liver trust website for information and advice about nafld, it explains all the stages and has advice about diet and exercise. The UKELD score is used to determine if you need a transplant and is calculated using your blood tests results, British liver trust website will give more detailed information. You can also call their specialist nurse helpline who can talk through your results.

britishlivertrust.org.uk/in...

Hilary xx

[kaytie456 in reply to Yellowsydney]

Many thanks all in hand

[AIGal73]

I have autoimmune hepatitis, had been experiencing all the symptoms you mentioned plus others on and off for years, until becoming acute. Although, the liver does not feel pain, I experienced pain, as well. I describe it as a dull ache that radiates to my back and abdomen. The liver feels like a hard, brick that interferes with movement and comfort when inflamed. I think everyone’s experience is very individual and doctors get stuck on textbook and “in theory” knowledge. I’m still learning as I recover that so many symptoms I thought were something else were, in fact, due to my liver. We know our bodies better than doctors, despite their training and education.

[kaytie456 in reply to AIGal73]

Many thanks for your reply. Funnily enough my GP mentioned his 'text book' only yesterday about the fact that I wondered if the pain I get is connected to my liver diagnosis - his reply "Probably not"

[PinscherLover]

Hi

I have the same symptoms but have been told the pain is not to do with my Liver. It is being looked into as a Gallbladder problem as an ultrasound showed Gall Stones

Whilst I am sorry for you, for me, it is nice to hear of somebody having the same symptoms .

Have you been told why you are having the pain and how it can be managed?