As far as I know from the Compendium of the PBC Foundation about PBC, right shoulder is not a very rare symptom with PBC. I would suggest you talk to them, either Robert or Collette have a long experience with patients having this and many other symptoms and can help you with some useful advice.
Just a wild thought.. try to see if a warm poultice helps? Or you can try, as it is totally safe, a remedy we use for swollen or traumatized joints : you crush 1-2 white cabbage leaves until they become tender and a bit juicy, wrap the painful spot/joint in it, a bit tightly, and leave it over night. No idea whether it helps with liver related shoulder pain, but is too simple not to try :).
Good luck and keep your faith...
YES! I have right shoulder pain! I thought it was a drug side effect or something. I had no idea it was a symptom of PBC. Interesting. Mine hurts in my back....in my shoulder blade area. Is that where yours hurts too? It is VERY bothersome and I've been hesitant to take anything for it, as everything seems to affect the liver.
I had shoulder pain before I was diagnosed and my liver enzymes were sky high. I put it down to referred pain, from my liver that was in distress at the time because I was still drinking alcohol and was overweight. It has stopped now that I stopped alcohol and lost weight. Pancreas problems can cause left shoulder pain. Incidently my husband put cabbage on his elbow when he had gout, an old french custom he told me, it didn't help his pain.
I understand exactly what you are going through. The pain is absolutely excrutiating. I suffer with pain in both shoulders but with me it is mainly the left shoulder that I have the most problems with. Some days I can hardly lift my arm up above my head and trying to bend it up behind my back almost impossible. I'm finding it more and more difficult to put my bra on let alone take it off.
I use a combination of Voltarol gel rub (or Ibuleve) and rub that into my shoulder joint area, along with that I put heat on my shoulders ... I tend to use wheat bags because you can mould them around each shoulder whereas a hot water bottle is a bit on the stiff side. I won't say this takes the pain away entirely but it certainly helps me. If you are like me you'll give anything a go once. My GP however has told me that there is an alternative - injections directly into the joint - which apparently is very painful to have - every 10-12 weeks. At this time, not being very keen on needles, I am a bit of a chicken to go that far but I may have to resort to that eventually. I suppose a minute or so's pain is worth it if it helps to alleviate the pain your in at the moment.
I can understand why you ask if your shoulder pain could be related to PBC as yours is on the right side, same side as the liver. But I am not sure because mine is on both. Maybe its related to the PBC joint pain in general, it would be very interesting to know either way.
Hope you find something that helps you very soon. All the best.
Have been having treatment from a physio for ages on right shoulder. Pain sometimes generates down through arm. I thought maybe i had injured it at work. We have given up now as its getting no better and my bank balance is getting lower.
I went to the doctors with right shoulder pain - and that led in the end to my diagnosis for PBC.
I was told it was probably referred pain and once the imflamation went down in my liver it should go away. It didnt! I have had physio and acupuncture on it and that did stop it for a while. Now I can get it in the left or the right shoulder, and will last from about 4weeks to 4 months at a time. Guess that blows the referred pain theory out the water. But I do have alot of pain in my tendons in my feet, elbows etc I wonder whether it is imflammation in the tendons in the shoulder? As for dealing with the pain and Ive tried most things. Ive ditched the painkillers as they didnt work. Acupuncture and physio can work but you may need the two together as physio on its own didnt work for me, but there is the expense. Otherwise there is just the relaxation technique that I was shown at the physio dept that helps to take my mind off the pain.
I have been referred to a tendon specialist now for my ankles, so I intend to get him to have a look at my shoulders and run my tendon theory past him.
As far as I know it's not exaclty a "symptom" of PBC, as it can be associated with numerous other conditons, but it does occur with PBC patients. Check out the PBC Compendium with the PBC Foundation can send you.
hi i have right shoulder pain that was an original injury, it was investigated and it was the orthopaedic surgeon that drew the connection between the two. I'd almost forgotten about what he said till i read this.
It is uncomfortable to lift above my head and to sleep on, it does creak and crack but i'm assuming thats due to the injury which was 3 years ago and i was told that if it was going to improve it should have done by now.
Thanks for the post interesting question x
I was in manual work back in 2009 when I popped in the docs after suffering with right shoulder ache for several wks. I thought I had maybe strained myself at work as that seemed obvious answer. I never took anything for it, then it vanished.
In 2010 when I started with the itch and was feeling fatigued and still doing a lot of manual tasks in a different job to 2009, I ended up with blood tests over the mths and by the end of 2010 I was diagnosed with PBC.
I still get a bit of intermittent shoulder ache at times, moreso if I have been carrying and lifting things earlier in the day. I sometimes find in bed during the night I can feel it more if sleeping on that side with my weight on it.
I know now that it is with PBC. I read that there is the phrenic nerve that runs down that side and round the liver and that is what I personally put it down to. I decided it was this after reading on liver biopsies and the fact that some patients feel a sharp pain in their right shoulder on needle impact when having one. (I read up by the way prior to having the AMA blood test as knew that if that had not turned anything up the next stage would have been the biopsy.)
For me my ache isn't overly-bad and I can withstand it. I tend to do a few shoulder moves at morning and yes as spoul has stated previously I too can hear cracks and creaks! I've never really had an easy life, done a lot of manual tasks/chores and never thought anything of it and to me I also think that part of mine could be due to this. Doesn't help really tho' if you are right-handed as an hand and arm that is prob used a lot more than the left.
Yes, I had a pain in my shoulder, like a catch/trapped nerve after the byopsy. Haven't has it since,
Yes, I have it too but its across my shoulders and I heat a towel on the radiator and wrap it around my shoulders. It really helps. I also get spasms between my shoulders. First time it happened I initially couldn't breath it was so sore. I couldn't move and had to stand for a while with my back against the wall. All I could do was to get painkillers and go to bed. Toolk ages for it to ease. My left shoulder is worse because I fainted in the Doctor's surgery one day. I hit my head on the wall and bounce off her desk on the way down. Then landed on my left shoulder. I'm on Arcoxia for arthritis in wrists, hip, knee; Co-codamol for joint pain from PBC, Scleroderma; Tramadol for fibromyalgia, prothyidine and diazapam for depression and sciatic, Adalat for Raynauds. Als for PBC. Zolpidem for insomnia. At min pain relief works but my consultants have said that it will be moved up as these conditions get worse. Not sure if anything here helps you but sometimes its just good to know that others have the same problems and understand the pain and discomfort. (:-)
Have you ever had your gallbladder checked? I had right shoulder pain when I had problems with my gallbladder.
I agree with melisab, gallbladder pain is the likely candidate with this type of pain. If you have already had it removed, then I don't know why your getting shoulder pain. If you have still got it, I would strongly urge you to get it scanned honey
Hi Mandyc. I had right side shoulder and chest pain for a very long time before diagnosis. It used to travel up my neck and down my arm but is almost non existent since watching what I eat (low fat) and taking Urso. I can say with confidence that the pain is caused by PBC - I had both a liver biopsy and and ERCP which themselves were painful in just those areas. I would guess it's caused by the inflammation of the bile duct and liver but who knows with this disease?
i had unbearable pain in my shoulder, went to docs who gave me anti inflamatory pain reief jab in the bum told me it was due to liver inflamation affecting diaphram.
Itchy did it work?
If so what did the doctor give you?
sorry Val02, was in so much pain didnt take in what he gave me other than it was an anti-inflamatory jab, but it certainly eased the agony quickly.
Thanks for that Itchy - will hae to ask my doc next time I see her.
Hi, my right shoulder aches and clicks a lot now. I've had this for a few months and it just started out of nowhere but I thought I must have strained something as it feels like muscle ache. It runs from my right shoulder, up my neck and sometimes I can feel it up the side of my head by my ear. It's always there but sometimes it does feel worse than other times and at night it feels worse. I've had a massage for it and do some stretches for the shoulder and neck. I've only taken paracetamol for it but mostly I just put up with it.
It might be part of PBC, who knows. I was diagnosed in 2009, had my daughter in 2010 and now had an enlarged liver and get pain under right ribs. I know you can have referred pain and since its all down the right side of my body, it could all be linked up.
Don't know if this will help any of you - but I was diagnosed Coeliac a few years after PBC and since going on the gluten free diet my shoulder pain and my swollen liver pain seem to have massively decreased - I always felt lile I had a rugby ball under my ribs but once on the gluten free diet this feeling went - never quite understood the connection but worth seeing if your pain timing is related to what you have eaten that day - worth a try perhaps
I had pain in my right shoulder and went to Dr, who sent me to specialist and got MRI SCAN and then an injection on right shoulder ( it hurt) but seems to have done the job, every so often the shoulder goes out of place and hurts for a few seconds..... didnt associate it with PBC though, hope this helps
Have you still got your gallbladder?
That can cause unbearable right shoulder pain.
Trust me, I know, I've had it
Now gallbladder gone, so as pain
Hope this helps xxxx
Hi skywalker, I have had PBC for 17 years, just had my gallbladder removed a year ago and the pain in my right shoulder began after that. I am a little relieved to find it is probably related to the PBC because I was starting to think it was the way I was sleeping. I don't take anything that can affect the liver adversely, so I stick to joint pain cream and heat. It helps for awhile but always comes back.
YES AND ITS AGONY!!!! I have heard its because a nerve that runs near your liver gets pinched when your liver is swollen. Today mine is KILLING ME!