Right sided pain fatigue. GI specialist confused.

[engasser]

Just went to see my GI specialist today. For the last month I have had bad hip pain (mostly hip but sore other joints too), muscle pain and severe fatigue, and I keep getting bouts of unbearable right side pain ( liver). She doesn't think any of this is related to PBC. She did a lot of labs so hopefully something will show up. I can't function!! Oh and she wants to see me in six months. Sigh. I think I need to find another specialist. I cant get to see a doctor there anyway only the NP. Just wanted to vent. Thanks for listening.

[wongie]

Hi Engasser, I get pain in my upper right side all the time. My gastro doc said it had nothing to do with my liver as you do not get pain in your liver. He suggested putting a camera down. I said No Thank you. Regarding my aches and pains, I was getting a lot of leg pains especially at night when I was resting. He referred me to orthopaedic doc who sent me to a physiotherapist. I now have acupuncture and low and behold no pain at night.

[engasser in reply to wongie]

Acupuncture sounds like a good idea. I wondering if I have problems with the sphincter of oddi (hope I spelled it correctly). That can cause pain too. Does your pain come in waves and last up to 18 hours? I just lay ther and writhe in pain the whole time. Then I'm sore on that side for days. Sigh.

[Glenys in reply to wongie]

Have you looked at fibromyalgia, similar symptoms, particularly at night, though most conditions hurt more at night, when there is nothing to distract. If you are getting restless leg as well, Magnesium supplements can help, but not Mg Oxide, which doesn't absorb or work too well.

[Cat19 in reply to wongie]

Hello Wongie

I was told the liver doesn't get pain by two GP doctors, but the surgeon who did my gall bladder operation and then with another surgeon saved my live when my liver was bleeding twice, said last week after scan that I have nodules on the edge of the liver which is cirrohised ,but I have one big nodule near the space where the gallbladder was, this is what is causing the pain, he said if I get sever pain to get to the hospital, ASAP they have to keep close eye on me and these nodules which could bleed or turn cancerous.im on slow release tramadol 100 mgs am and pm this helps with the liver pain and joint pains, I have just been diagnosed with osteoarthritis in both hips but left one has terrible wear and tear( hip replacement) but I'm not ready as had the three operations in June last year. I'm glad your leg pain is gone, you may need to see your gastric dr get a scan re your liver pain. Good luck x

[Lisacj]

Sorry to perhaps put some doubt in your minds, but gastro dr know very little about PBC.

It is a heptologist you need to see. Right sided upper quadrant pain and muscle pain are symtoms of PBC. They are listed on many sites. No the liver cant feel pain it is the associated areas.Please see a hetologist, good luck.

[engasser in reply to Lisacj]

If my labs are negative I will go to another doctor. Thanks for the information it was helpful. I told her that many people on this site complain of this pain and she looked at me as if I sprouted a third eye. Oh well thanks agin. P

[Disy]

Hi there

yes I agree with lisacj. I have been reading up lots and lots and I too suffer from the upper right pain. It is the effects of PBC with the inflamnation that makes all the nerves and send messages saying I'm sore. Plus with some people their liver sits a bit higher under their ribs making it uncomfortable. I find by laying for a while with my arms above my head helps with the discomfort. Hope you are feeling better really soon

cheers

Di

[engasser in reply to Disy]

Thanks for your response. Sometimes I let the specialists get me down. A shame we know more than them. I trust this site and the wonderful people more than them.

[Disy in reply to engasser]

Yes unfortunately we do seem do know more but I think that is because we are the ones going through it. Keep a smiley face and positive outlook. Don't forget that we all have different levels of symptoms and some have unusual symptoms that some of us don't experience. We are all unique in our own way. Take care of yourself and do what you think is right for you.

cheers

[engasser in reply to Disy]

Thanks Disy. One day at a time.

[fudge13]

I have been getting a lot of joint and muscle pains.I saw a great Dr in July who tested my bloods for vitamin D, as being low in vitamin D can cause these symptoms.My results came back 2 wks ago that my vitamin D levels are very low and I've been prescribed vitamin D and calcium supplements.If you haven't been tested for that it would be worth asking your Dr to do it,as people with liver disease have difficulty processing vitamin D in the normal way.

I do also have right sided pain too.Hope this helps . xx

[engasser in reply to fudge13]

That was my first thought as it came on quickly. I am a vegan and I know PBC causes absorption problems. She did check me for that yesterday along with b vitamins. I am hoping that will be my problem and I can fix it quickly. I hope to find out tomorrow. Thanks for your advice. Patty

[Maggs3petts]

I get that too. I think it depends on the Gastroentrologist- mine is brilliant - he listens and is very knowledgeable on PBC. I've attended his clinic since first being diagnosed with PBC in 2005-6. Difficulty for any of my Consultants is that I have so many other illnesses/conditions: anaemia; arthritis; asthma; depression; fibromyalgia; hiatus hernia; insomnia; migraine; oesophagitis; PBC; Raynauds; sciatica + scleroderma - its very difficult for them to say the pain is from on problem when it could be from another. Sorry not much help. But a change of Doctor might help.

[engasser in reply to Maggs3petts]

Oh gosh I'm sorry you have so many other problems. She said she might think it is the beginning of maybe another condition as people with PBC often have several things wrong with them. I do think I will find a new group. It is frustrating that I can't get to see a actual doctor only NP - normally I don't have a problem with that except she doesn't know as much as I would like about PBC. Thanks for you help and concern. Be well. P

[Magnolia]

The liver pain may be from the "liver sac", I read it can cause pain even though the liver itself does not. Some people think that the Ursodiol cause our joints to hurt also. But I do believe that it slows down the progression of the disease.

[engasser in reply to Magnolia]

It is a mystery about the right side pain. Thanks for the info. Patty

[skippydownunder in reply to engasser]

Have you got your gall bladder still? I had wave like pains in the right hand side for hours before I has it out. That was about 8 years ago but I will never forget that pain. This was before I was diagnosed with PBC.

[engasser in reply to skippydownunder]

Yes after the first episode I had a hida scan and a MRI all negative. And all the blood work that the GI specialist did all came back negative. Sigh. She now want to scope me colonoscopy and Upper scope. I think I will see my regular doctor and get a second opinion. Thanks for your response. Patty

[skdavis59]

Hello...know the feeling! I also sometimes have the bad upper right pain and goes around to the back also...mostly when I’m laying down. Same symptoms you described. Try to remain positive and not complain, just hard sometimes.