Joint and muscle pain etc...

[arthole]

I have been struggling with liver issues for the past 4 years and feel like I am getting nowhere with any kind of diagnosis especially in the current Covid climate. I have pain in the liver area (RUQ) and occasional nausea all of the time and pain in my right shoulder. The pain is worse if I drink and has been creeping over to the left side also. I was told originally that I had fatty liver after visiting the doctor with the pain and nausea and the usual battery of tests were carried out leading eventually to what I consider to be a misdiagnosis of Fibromyalgia, as I also have hip and rib pain which can be debilitating at times.

I changed my diet, stopped drinking, lost weight which cured the fatty liver but still left me with the dull ache so many experience with liver liver disease. I was told by a specialist, more as an after thought that I may have ‘mild hepatitis’ which is very hard to research as it always seems to be ‘steato hepatitis’ in any online literature which cannot be possible if the liver is no longer fatty. I have abstained from alcohol for quite some time now but the pain persists.

I was wondering if anyone else has had a similar experience and also gets joint and muscle pain / issues as various websites highlight, but consultants seem to ignore. They will not entertain a biopsy as my last fibroscan was 4.3KPA with a very low CAP so there wasn’t concern about fibrosis or fatty liver, however if the liver is constantly inflamed and painful surely this warrants further investigation!!

Any thoughts would be welcome.

[AyrshireK]

Did they ever investigate the possibility of an auto immune liver condition? I recall you saying about fibromyalgia. A lot of auto immune hepatitis patients have joint and muscle pain along with their liver issues.

Katie

[arthole in reply to AyrshireK]

Hi AyrshireK, Yes, they did all of the tests and ruled everything out. The fibro diagnosis came about when they sent me to a rheumatologist. I am not hyper mobile which is the common feature. My partner is hyper mobile and has Fibro and the pain is more widespread with her and mine is more localised.

They seem to hit a barrier with tests quite often when it comes to the pain factor and will not send patients for a biopsy as it's expensive and invasive however, it seems to be the only way to detect molecular changes in the liver that can point to specific conditions like NASH or ASH. My liver seems to be caught up in a vicious cycle of inflammation due to my immune system. They have stated that my liver is normal sized and smooth in texture. As stated before I feel I have Hepatitis induced by alcohol and diet which persists regardless of the absence of steatosis due to the changes I have implemented to lifestyle (diet, excessive and no booze).

I just feel very down as there is nothing more I can do myself to reverse the situation regardless of being told that is the way forward. I know that there are medications that can reduce the immune response but am not being treated or even properly diagnosed. The specialist said to do more blood tests in three years time!!! My Alt has been up and down and was normal last time but I feel ill constantly but battle on regardless as what else can you do.

Also I did a well man test 6 years ago and was told by the nurse I had slightly raised cholesterol, what she failed to tell me was that my ALT was 260 which I found out 3 years ago when I requested all the results from the surgery when I moved to London! I was not feeling ill at the time and fell that the whole thing could have been avoided if they had told me this simple fact and I would have changed my lifestyle back then when it was not too late.

[arthole in reply to arthole]

Exercise not Excessive!! Corrective text.

[AyrshireK in reply to arthole]

So have they carried out tests for auto immune hepatitis? It results in flares of elevations of inflammation in the liver. It obviously can go alongside lifestyle related causes but isn't lifestyle related in itself. Did you have any auto immune antibody tests?

My hubby has cirrhosis due to AIH, in his case he never had the typical symptoms of AIH but it was damaging or did damage his liver in the background and didn't become evident until he presented with decompensated cirrhosis.

Hubbies consultant has said hubbies AIH is burned out but because he is currently showing no ongoing hepatitis/inflammation (deemed via biopsy and bloods) but because his condition was silent up until it was too late he is just on a maintenance dose of 5mg per day of prednisolone to deal with any flares that may go on in the back ground.

Katie

[arthole in reply to AyrshireK]

I was told that I don’t have AIH. Just wish they would biopsy.

[Alibaba80 in reply to arthole]

I have this same problem. Many symptoms of the liver and feel like I have the flu every day and pain in joints and muscles and liver area.....I had to insist on scans (; which showed nothing) and in the end they did a biopsy which showed Nodular Regenerative Hyperplasia

[Hidden]

HiI'm sorry you are struggling. I too have ruq pain. Fatty liver may 2016, was told my liver was very enlarged , causes the capsule around it to stretch which causes the pain. The nerves are in the capsule and not in the liver. I had a biopsy in November 2016 which diagnosed Nash and then a fibroscan early this year which diagnosed compensated cirrhosis.

I do hope you get some answers soon.

Take care and stay safe Lynne

[arthole in reply to Hidden]

Sorry to here that. You went from NASH in 2016 to cirrhosis in the space of 4 years! Did the pain persist throughout and do you get hip and rib pain?

[LeiL in reply to arthole]

I’m like you exercise, weight loss, eating changes although told to eat a regular diet including red meat. Pain started after my weight loss. Now have horrible bone pain including hip pain. In three years have progress from 4.3 Fibroscan to 7.0 earlier this year. My IgG has jumped 200 points in two months so that tells me things are bad, plus I now have neuropathy.

Resistance Training and hard exercise increases the pain.

[arthole in reply to LeiL]

Sorry to hear that. Did you have fatty liver before and were you told to lose weight? Weird to have gone from 4.3 to 7! I am worried this will happen to me also. Do you still have pain in the liver area also? You would think they would try and do something about the inflammation to try and stop progression if diet alone isn't working!

[LeiL in reply to arthole]

Didn’t know anything until I was diagnosed with NASH which was moving at a moderate pace and now appears to have speeded up. I initially was hyperthyroid, became hypothyroid after total thyroidectomy and now liver issues. I now have pain in the lower right flank. Oh, and I developed acid reflux/gerd for the first time in my 62 years.

[arthole in reply to LeiL]

All sounds very familiar. Is there nothing that can be done to slow down NASH? I got rid of the fatty liver element early on and they said that would cure it, however this is a misconception as inflammation can persist regardless of removing the capital S from NASH.

[LeiL in reply to arthole]

The same with me. According to the Fibroscan and MRI the fat is gone. IgG levels increased.

[LeiL in reply to arthole]

Also because my Liver Test Profile is within the “normal” range no doctor will investigate further.

[arthole in reply to LeiL]

Have the IGG levels increased by much? They seem to a marker for AIH but can be elevated in Chronic Hepatitis which seems to go undiagnosed in many.As stated before the immune system is damaging us for no particular reason as the original stimulus (drink, bad diet etc) has been removed from the equation. I haven't even got a record of my IGG and I thought I had very test under the sun performed!

[CarpeDiem11 in reply to arthole]

I have AIH and IgG levels are just one of the markers for AIH. There are many things that need to be put together for AIH,but this on its own doesn't confirm anything. However, taken with other readings it might point to something else. Usually they will be looking for autoantibodies for AIH as well as ruling out other possibilities. Just wanted to clarify this in case others read it & jump to the wrong conclusions. 😉

[CarpeDiem11 in reply to arthole]

Have they measured the ALP? if this is increasing along with GGT levels and bilirubin it could point to gallbladder issues, especially since you mentioned raised cholesterol. The pain in the right shoulder is also a possible indicator.

[arthole in reply to CarpeDiem11]

Thanks for the info. Yes I can see it might be a bit misleading. I realise AGG, AGA etc are more part of their toolbox for diagnosis, and not really a definitive, as they can be an indicator of numerous conditions including Hepatitis in its numerous forms, it appears my AGG etc is more or less normal, but my last blood test was over a year ago now. As to the ALP question, all normal, my gallbladder is fine, my liver now looks totally normal in appearance. It started with My ALT out of whack with AST also slightly above normal, pain in my RUQ and nausea, ALT and AST have now stabilised. I was diagnosed with NAFLD as at the time (4 years ago) my liver was very fatty, I gave up the booze and rich food, got rid of the fatty liver completely after losing 20kg, but still have the pain and nausea even though everything else is normal.

[CarpeDiem11 in reply to arthole]

Don't know what AGG & AGA are. Auto antibodies I mean are SMA amongst other things. Since they have already suspected AIH, I'm sure they would have checked for those already. Good luck on your quest to get answers. Biopsies are only done when the other things are in place and they need to check the type of cell damage. They are not used to diagnose, but to confirm. Sorry your issues are not being resolved, but it does look as if your liver has gone back to normal judging from what you've said : obviously your lifestyle changes have really helped.

[arthole in reply to CarpeDiem11]

Sorry I meant IGG and IGA. Thanks for the reply.