imansmum12 years ago

Hi Claire-Isabel, I was diagnosed in 2008 and have been suffering from aches and pains for the past two years.I have been taking Naproxen for this,and it has helped,I am also taking MST (slow release morphine) for pain,but I also have sphincter of Oddi dysfunction which is very painful.I came off Naproxen for five days a few months ago and was in agony so went straight back on it again!Some days are worst than others even with all the drugs that I am taking. .All the best

odchacon in reply to imansmum8 years ago

Hello,

I saw your post about sphinter of oddi dysfuntion. I've been suffering with this right side upper quadrant pain for a long time. It got worse after the gallbladder removal. Sometimes I have mild pains but others divilitating pains. Could you please tell me your symtoms?

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debi_p12 years ago

Hi I was diagnosed sept 2011 but been having probs since 2009. I had aches and pains all over but was told it was sciatica due to a slight slipped disc. WRONG lol seems that PBC has its own agenda and this can be one of them. I now also have Fibromyalgia which also gives u aches and pains soooooo i cant really say what is causing it. have spoke to few people on other PBC sites and they have the aches and pains too. Not really much help was i lol, anyhow hope you have more "good" days than bad x

Hidden12 years ago

Hello everyone especially Claire-Isabel, I too am very new to this site....

I thought I had a shoulder injury back in 2009 due to doing domestic work at the time. The pain I felt in the evening but it wasn't unbearable. Noticed it comes and goes depending on what I've done throughout the day.

I started with the itch early 2010 and Dec 2010 was diagnosed with PBC. I was informed at the time my Vitamin D level was 'low but not too bad'. (I ended up requesting my blood test results as to me this meant nothing!) The reading was just one number below the minimum. Given Vit D is down to our bone development/growth I reckon this is why a lot of people have these aches and pains.

I got the letter from the consultant after another Vit D blood test several months later and he mentioned perhaps having Vit D injections at the GP surgery, something that I will try to avoid at all costs as I'm still 13mths on not happy about having to take even the URSO daily, expect for life.

I've never been no sun-lover nor ever been abroad as yet but last summer my husband and I took 4 short English breaks (3 camping) and I basked in the sun and in Oct 2011 when I had the next blood checks after a 5mths lapse, the Vit D was more than adequate. I did feel great up until Nov 2011 but now we are in the colder, wintery months with very little sun expect the Vit D is dropping once again...

I have noticed since diagnose that I get a stiff thumb on my hand that I do not write with and it can be slight painful to touch but I ignore it as best I can. I also have joints that crack so whether this is due to PBC now or wear and tear (being an avid walker) only time shall tell. I'm 47 by the way and have read that a lot of people diagnosed with PBC have in the past suffered menstrual problems but I never have and I am currently still without problems, not yet having started the menopause.

Hidden12 years ago

I have pain in the joints in my shoulders and hands at the moment and also in my knees after sitting for a while, My GP said it's nothing to do with PBC, in fact my consultant said the same, so I gave them both a leaflet to read, really and truley I think that now I have my diagnosis that they don't care any more.

I have been ill since 2007 but it took them 4 years to diagnose me with PBC.

cazzi12 years ago

I wa diagnosed with Pbc in 2005. and am in my late 50s. I have experienced pain and stiffness in my hands and other parts of my body for along while and even seeked help from my Gp, but then it went away, and until the next episode I would forget about it. However before last Christmas ( 2010) I experienced somethig quite different. Pains in knees, moving from one to the other, then hot swollen painful fingers, but the pain only lasted a day or so before resolving and starting somewhere else. As this happened over the Chrsitmas period I took photos to be able to explain/ show to my Gp my symptoms. I arranged to see a rheuamtologist privately and his initial diagnosed was " pallindroinic rheumatism". Arthris that moves around the body but not as debilitatnig as Rheumatoid arthrits.-I had tested negative for this. He persevered for a diagnosis and eventually after a battery of blood tests he announced that I had tested positive for SLE (Lupus). I am being treated with plaquinel, which are antimalarial tabs and haven't had anothe flare this year. I was under the impression that it was very unusal for pbc and lupus to occur together although they are both autoimune conditions.

zipitydoo12 years ago

it was while i was being tested for SLE that they found the positive AMA also positive ANA but other auto immune things not SLE.

TracyLou12 years ago

I was diagnosed with pbc in 2005 and had pain in my shoulder after I had my first child back in 2001. When I was prescribed prednisolone the pain went away. I've had tests for rheumatism but it was negative.

I've had some pain since but not as severe, but early december last year I had a pain in my neck which goes into my arm and still have it. Doctors don't know what it is and i guess its related to the pcb. I am taking painkillers prescribed by the doctor and have an appointment on Tuesday with a physiotherapist.

I wish I knew for certain whether the pain is related to pbc.

Jtxx12 years ago

Never really thought of the sore neck being a symptom of PBC! I have a lot of tension in my neck and do get pain, especially down the right hand side but I do try to get a regular massage which I find helps for a wee while.

I have suffered with restless legs for years and again never put it down to PBC as I was only diagnosed with PBC/AIH overlap symdrome in May 2011. All seems too co-incidental.

My legs and arms today have been really heavy and I have been getting a numb/cold/tingly feeling (hard to describe) all over my body today. Never had this before! Why is life never simple.

Good luck all and keep well, well as well as our bodies will let us! x

Hidden12 years ago

Apparently the phrenic nerve runs from the neck through to the liver and it is said that patients undergoing a liver biopsy may feel a sudden pain in their shoulder on impact of the needle in the liver.

This is one of my thoughts on why people diagnosed with PBC may experience this pain.

catherine6912 years ago

Hi there, please be careful regarding the pain in the neck that travels down to the arm, this happened to me and it turned out (after I had recieved blood test, thats when they discovered pbc, physio and finally mri) that I actually had a very serious cervical spinal injury which the doctors said they only seen in people who were either involved in car accident or very old people Im 42 and had not been in any accident do did extreme sports, all Im saying is be carefull and dont put everything down to pbc, get it checked out properly

Beanie12 years ago

I also have lots of muscle pain, which I've only had in the last 12 months, and I have very stiff joints in the morning, and very sore muscles in the evening, especially if I've been busy. My knees, shoulders and hands seem to be the worst. I've started to take Vitamin supplements, as I heard that it might be related to the inability to absorb vitamin D if you have any problem with your liver. I've only been taking them for 2 weeks so they've not had a noticeable effect yet, but it's worth a try!

Jtxx12 years ago

When I had my biopsy I had a terrible pain in my shoulder on impact of the needle and I needed intravenous pain relief to help. I understand what you mean catherine69 about not puting everything down to PBC. I do not have pain down my arm and since I have had a lot of these symptoms for a number years now I think it is very difficult to tell what causes them. i do agree with you that we should all watch ourselves and seek medical advice if necessary. Is your back okay now?

When I mentioned Vit 5 Deficiency to my consultant today he looked at me as if I was daft. He did not make much of a comment one way or the other regarding its benefit. Hope it works for you Beanie.

Val0212 years ago

Hi Im new to this, but when I saw this thread on aches and pains I thought thats me! I was diagnosed in Dec 2009 with PBC, but it was the terrible aches and pains that led to my diagnosis. For a year previously I had the most terrible pain in my shoulder and was sent to the MATT clinic for investigations into the cause. It was down to the thoroughness of their tests that I was eventually diagnosed; even though on the first visit he assured me that the tests were just a precaution and he wasnt expecting them to find anything! How wrong they were! They had me back down there two days later for more blood tests, they called down a rheumotologist to have a look at me - after alot of head scratching they decided there was definitely something wrong, but they didnt know what but they would send me over to Gastro and get them to take a look. A week later I was in Gastro being told "if he was a betting man he would say I had PBC", but he needed to do more tests/biopsy which confirmed what he thought.

I am plagued by the tiredness, not really the itching, but restless legs, bone pain, muscle pain, joint pain, my arches have collapsed and I struggle to walk. I have also developed tennis elbow in both arms. They tried anti-imflammatory drugs but I reacted badly so I had to stop.I have depo-Medrone injected 3x a year, which helps but not for long. But it is the physiothery that helps the most. I had an extensive course to deal with my shoulder pain, he used acupuncture as well, and the pain subsided in my shoulder. I now have exercises which I do twice a day, and this more or less controls it. So, when I was back at the GPS (again) with my tennis elbow which was so bad I couldnt sleep, I refused steriods and asked her to refer me back for physio.

My conclusion is after 4 years of them trying to treat my aches and pains the only thing that really helps in the longer term is the physio and the exercises they gave me to do. Its not a cure all but it has helped make some of them more bearable.

No joy yet on the feet and the walking - anyone?

Missboro12 years ago

Hi Val02, ive just read about you saying your arches have collapsed, i get pain in my foot on walking and im not sure if its because of the PBC or if its fallen arches. Quite a few years ago i had fallen arches and it was very painful, i had to see a specialist who gave me special insoles to wear and it cured them in a couple of weeks. The pain i get now isnt agonising to walk on but its painful enough to make me walk with a limp. Its only in the ball of the foot and when i had fallen arches it was a lot worse than it is now.

Val0212 years ago

Hi Hazeleyes - thanks for that, I am going to see a podiatrist next week, but Ive had to go privately as the NHS werent providing. So fingers crossed insoles will help me too!

Hidden12 years ago

I have experienced pain in my hands feet and elbows for a number of years. It feels as though the areas are stiff, they feel warm to touch, but touching is very painful. I find the intensity of pain varies and seems to be worse the better I've slept. When it first happened when I got out of bed I couldn't walk properly: I staggered and reeled about and fell into walks and furniture. I also found that the more I moved the quicker the pain went, such that an hour after getting up the pain may have gone altogether. Movement definitely helps enormously in my case. Now when I wake I have 10mins just moving the affected parts before I get up. I have access to a private physio and she told me that our bodies will interpret anything "more than usual" as pain (such as heat, cold, pressure, etc.) so now I try to think of the areas as too red and the fidgeting pre getting up is injecting yellow to make a happier orange. Sound very silly, but it works for me. I am definitely putting this symptom down to pbc. It's a long way from my liver to my hands and feet... I have found acupuncture to be the very best form of pain relief, but it's not for everyone. Shame it costs so much more than a presciption. All the best to my pbc friends.