Muscle pain

Hi I was diagnosed with pbc in September,after second opinion am back on waiting list for biopsy re aih or fatty liver , just wonder if anyone else suffers from muscle pains ( reason for seeing gp in the first place ) pains got better after starting low dose urso ( coincidence? ) but back with a vengeance this week both arms and tops of legs and knees , like a constant nagging ache gp has told me to avoid painkillers just don't know what to do with my self , hurts in the day but waking me up at night too 😢anyone got any advice ? Thanks

15 Replies

  • Louisethew,

    If you scroll down on this page where you've posted and I replied, you will find a section called "Related Posts" There you'll find Muscle and Joint pain related posts.

    Muscle and Joint pain seems to come with the PBC territory unfortunately. But sometimes it can also be a crossover AI like arthritis. You'll have to see a rheumatologist to make a diagnosis. Hope this helps.

    Stella ❤

  • Thank you , saw a rheumatologist first he thinks ahi, but have a follow up appointment with him on Feb if not liver will ave a read up thanks

  • Did you mean aih? Sorry to hear that if it is confirmed. PBC is enough! I had muscle aches for years before my PBC diagnosis. None of my doctors could figure out what was causing it. Then this past March... Joint swelling and pain. I saw a rheumatologist and was DX with seronegative RA. Fun. But, they started me on sulfasalazine and it's helped. 👍 Everyone is different. Hopefully you will get it figured out. I do notice if I eat carbs or occasional sugars ...i get muscle aches worse. Maybe a connection?? I don't know. 😔

    Stella ❤

  • Yes aih 🙄 , my diet is rubbish trying to eat better and lose weight have been overweight since childhood so it's going to be a long hard slog 2 1/2 stone gone already , have been pain free for about 4 weeks had forgot how fed up it makes me feel when it's back my arms feel like I've been weightlifting for days !

  • You'll lose it👍. The better you eat, believe it or not but, the better you'll feel. At least that's how it seems to be for me.

    What's a "stone" as far as weight goes? I've never understood that. 😔 Either way good job!! Any amount you lose does you good in so many ways if you have it to lose.

    Some who don't have it to lose are losing weight. That can get tricky.

  • I have none to lose. Mangos are on the healthy food list, 100 calories per cup. They are known as the “love fruit” woohoo 🤣. Maybe I’ll gain a lb or 2. Anyway, they are rich in health benefits. 😋

  • Agree with Stella, stay at it! You can do it and you will feel the benefits. I lost 18 pounds ( that belly fat stresses the liver) and really helped me feel better-- lots of salad, veggies, had to say no to tiramisu desert ( which I loved) and other sugar fixes. I still allow a few bites here and there but I can feel how easy I start craving it then... best to keep that sugar switch "off" for me..

    It wasn't easy -- at first had to stop the nightly potato chips.. and frozen yogurt and dark chocolate... well you get the picture..

    Wish you the best!



    I have achy joints pains... I use microwave heat wraps (link above) to take the edge off my stiff achy neck and upper back. Not sure if you are in the USA but the brand "bed buddy" is quite good. They sell online or Walgreens/Rite Aid drugstores etc. I'm so sorry you're having the pain- hope it lets up!

  • I have had aching muscles for about 12months, initially in my arms restricting considerably my range of movement. About 6 months ago was diagnosed by Rheumatologist as having Polymyalgia Rheumatica due to significantly raised ESR blood test and symptoms. Currently on a tapering dose of Prednisone.Am told I am likely to need treatment for maybe 2 years. I am painfree and have good range of movement now. Life is back to normal PBCnormal!

  • I think it is always worth asking about and being checked for polymyalgia rheumatic, when mystery aches and pains develop. Over the years, several of my friends have eventually been found to be suffering from this after months of futile tests, useless medications and increasing pain - especially after waking and in the mornings.

    Also, something that - still, constantly!! - seems to be neglected in people with PBC is simple checks on vitamins and minerals. The lveles of vit D, and other fat-soluble vitamins can drop with PBC, as a damaged liver is no longer able to release the vit D from the foods it is in. Plus ... vit D is needed to make the calcium in food available for use by the body, hence some of the joint and muscle-like problems in those people with PBC. Other vits and mins should also be checked, but it seems as if this area is often ignored. Try to insist on having a full vit and min and nutrition check.

    Hope this helps xx

  • please get yourself checked for fibromyalgia i have it and pbc your probs sound similar

  • Thank you everyone will question at next hep appointment in January, ( should have had biopsy re aih by then ) and if no answers will push the rheumatologist in February for answer

  • Hi I have bad joint pain especially at night I take noproxen and it all so helps if you exercise especially swimming x

  • You should not take naproxen with pbc

  • Hi I take ormprazole with them it protects the stomach x

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