More questions and no answers

I have PBC, osteoarthritis and have had several surgeries for carpal tunnel and nerve problems. I have constant muscle pain/ soreness and when it's cold it gets much worse ( didn't know that was possble) I know cold weather affected my joints even more but, can't figure out why it does muscles. I have asked my rheumatologist on several occasions about it but he just says it's from the osteo. With the fatigue and itching and the osteo it is so hard to do anything and with this muscle pain it makes things even harder. When I do try and do things it just makes it worse and I then end up with a migraine (I also have herniated discs in neck and back) that can last for days. I do soak in a hot tub which only helps some while I'm soaking. Does anyone have this muscle pain and if so any advice would be greatly appreciated.

22 Replies

  • Hi Lisa,

    Where do you get the muscle pain and is it the same place or places the whole time?

    I don't know about muscle pain and PBC as technically I don't have it or am asymptomatic. But with my osteo I get various pains and grinding, wearing aches all over the place. With some of my joints, mainly thumb/fingers, the osteo is clearly having an effect on the tendons and nerves that run through or beside an affected joint, leading to sharp pains (like broken glass in your skin) and weird nerve sensitivity in patches of skin when you stroke the skin. In other areas like legs and buttocks, I can get an infernal ache/pain, which fortunately doesn't last for more than a few hours. I have put that down to osteo affecting the way I walk, bend and move generally, which may not be a good way of walking or moving and is certainly causing knock on strain to other joints and particularly muscles.

    Gentle heat really does help me and with the slightest twinge I put on a wide warm supportive back belt, into which I can add thermal pads as needed. When it's bad I wear the belt for maybe several days. Thermal pads/pouches that you can activate and then reheat (by boiling or microwaving depending on the type) are brilliant - you can put them anywhere using clothing or tubular bandages (good for leg muscles) but normally they shouldn't touch the skin so make sure there's a layer of fabric between them and you.

    Deep heat or chilling creams or gels are a complete waste of money as they've proved that the heat does not penetrate the surface of the skin - it never reaches the muscles. However cold water/packs after intense activity do help muscle recovery - but cold baths are several steps too far for me and I can't handle cold suffering from Raynauds anyway!

    Might be an idea to get your vitamin/mineral levels checked. Especially B12 considering nerve/numbness issues. It may be that something is out of balance.

    The other thing, depending where your osteo is in your body, is to find a really, really good physiotherapist - one that can really look at how you are moving, how you bend, how to stand up from sitting (most of us do it incorrectly!). A specialist physiotherapist, will be able to spot problems and suggest ways of moving that will help unnecessary stress on muscles and joints that are being affected by poor ways of moving due to osteo.

    Having osteo has definitely led to muscle weakness in certain parts of my body. Some areas have got very little muscle tone at all. I know I need to do more strengthening exercises to get my body get back more into balance but am struggling to find the time. Pathetic excuse I know. But if some areas are weak (or painful) then others have to compensate.

    Like you, soaking in a hot bath/tub is wonderful and for a few precious minutes pains seem to go!

  • Hi, badpiglet. I have pain in pretty much all muscles. I feel like I have been beaten all over. I do use heating pads (the ones you heat up) but, not very effective. My osteo effects all joints. My rheumy says I am too young to be having so many problems. I just turned 46 in Oct. I have medicine for the migraines from my GP but was told to take when the migraine is at its worse because of PBC. My rheumy has me on muscle relaxers to take at bedtime but do not take every night for fear of harming liver. I am going to talk to my GP about the B12 and about a physiotherapist when I see him next week. I know there has got to be something to help. Thank you badpiglet. I hope you are having a good day.


  • Hi Lisa,

    Pain in all your muscles? It doesn't sound like a knock-on effect of osteoarthritis at all, in which case physio won't cure it - might help a little but it sound as if you have an underlying issue that needs to be addressed.

    In your position I'd push to get all your vitamin and mineral levels checked, make sure your GP realises it's ALL your muscles and maybe ask whether you're seeing the right consultant - as something is clearly not right and your current consultant is not sorting it?

    At least you're seeing your GP soon - hope you get some answers.

  • Hi Lisa, I'm sorry you are in pain! I'm a little upset with your doctor. You are reporting constant muscle pain and he says, "it's from the osteo". What about treatment options or suggestions for pain management? If muscle pain is not within his specialty, he should at least refer you to another doctor who could help. He's not doing his job.

    Are you seeing a doctor for your herniated discs? If your spinal condition is bad enough to cause you migraines, it is time for treatment or at least a plan for pain management.

    It concerns me because I don't want you to be in pain, but also because you have an autoimmune disorder, PBC. Inflammation is not good for people with autoimmune diseases because it can trigger a flare up. It is generally recommended that people with PBC keep inflammation to a minimum. Pain is inflammation.

    Unfortunately, the only help I can offer is to point out how your doctors could better serve you. I hope that others on this forum can give you advice on pain management and what has worked for them. There are some really great, knowledgeable people on here. I hope you feel better soon!

  • Hi, Chynablue. My rheumy knows about my herniated discs but not much can do about it except maybe surgery later down the road (his words). He just tells me to keep doing stretching exercises and regular exercises. I am on tramadol for the osteo but when found out I have PBC was told to take it sparingly as with the muscle relaxers I am to take at bedtime. I am going to talk to my GP next week and see what he says. A friend of mine who has fibromyalgia told me I should get checked for that since she says it sounds a lot like her symptoms. I don't know anything about fibro either. I just know there has to be something to help. Thank you Chynablue I hope you are a good day.


  • Good luck and keep us posted! Hopefully your GP will have some good suggestions. I know there's more that can be done to help you feel better on a daily basis. Steriod injections, physical therapy, massage, chiropractic, TENS units... just to name a few possibilities. But you'd need a professional to guide the therapy so as not to cause further damage.

    My uncle went ahead with his neck surgery before it was absolutely necessary. He decided the daily pain and discomfort was not worth it and he wanted to live his life. That was 20 years ago. It was a great improvement to his quality of life, so perhaps its worth looking into.

    It just seems if the discs were taken care of, you'd be freed up to track down possible causes for all over muscle pain. It gets more complicated when there's multiple issues going on.

  • I disagree you can have pain without inflammation. Pain is not inflammation.

  • You're right. I should have said "most of the time" or "usually". They often go hand in hand.

  • What I'am going to suggest is have you had your vitamin D checked, I had wide spread bone and muscle pain and the rhummy checked mine it was very low.

  • This may sound random but get you Dr to check your vitamin D. They've just found mine to be deficient and put me on vit D tablets & although not gone completely my muscle pain is much better than it was. X

  • I also urge you to have your vitamin D level checked. Insufficient or deficient levels can cause widespread muscle pain. Myositis is an autoimmune muscle disease that also should be ruled out, as autoimmune diseases commonly overlap. People with autoimmunity should generally aim to keep their vitamin D level in the upper part of the normal range. I was told to keep mine above 70 at all times. For me, that requires about 7000 IU of D3/ day. So sorry that you've been in such pain, and I hope you find some relief soon.

  • Hi Lisa,

    I was just 'Googling' ... in-between work stints ... and I decided to check out hypermobility on the 'Arthritis Research UK' site, as it's ages since I've thought about it.

    While there I found 'osteomalacia' which is apparently the correct term for Vit D deficiency. It seems that one of the tests for this (or symptoms) is that it raises the levels of ALP !!

    Thought I'd let you know, as this will be worth mentioning when you see someone, and it might encourage them to do even more checks, as I believe other deficiencies are typical.

    [NB I'm really pleased I found it, as I've been taking 'omeprazole' for indigestion / ibuprofen protection, and I've queried it with my GP because of the mineral deficiencies it can cause, if taken long term, and it seems that it is linked to other deficiencies, such as Vit D and B12.]

    Hope this helps!


  • Hi Grittyreads - just letting you know that your reply to Lisa actually was a reply to me, it popped up in my inbox. Just in case she's not following closely and misses it, you may want to let her know you've responded. :-)

  • Hi,

    Thanks, Diane,

    I realised as soon as I saw mine pop up, so have already mailed Lisa. I don't know how it happened, as I was sure I was in the right place!

    Ho-hum. Thanks again. xx

  • Hi GrittyReads,

    Thank you for the info. I will definitely ask about it when I see my GP.


  • I forgot to ask of you or anyone else knows what A/G ratio, AST and MCHC are on labs? They are also low. Thanks again.


  • As far as I know, I have not come across A/G ratio or MCHC, either in the PBC file or my own test results or otherwise. AST is another of the liver enzymes that can be raised in PBC and other liver conditions - but as we've found out with ALP and Vit D, there are all sorts of reasons why these chemicals go awry, so it all needs checking.

    I would check it out with the PBC Foundation. If you want to ask on here, it may be best to put a new post, as unless people are having an on-going chat with you, members don't tend to come back to older posts once they have contributed. Your little post to me, above, has only come to me in my pc 'inbox' so others won't be aware of your further questions.

    I'd put another post/question with any new queries you have onto the site, as well as getting in touch with the PBC F advisors.

    Take care.

  • I agree with all the above advice on vit and min checks, especially vit D and B12. Also, particularly with badpiglet's advice on finding a really good physiotherapist. Where do you live (roughly)? Maybe if you let us know we can send you a private message /email (pm) with details of who we find brilliant.

    Years ago I saw several people in my old home town for a dodgy knee, and it was a complete waste of time and money. When I saw someone else who was highly recommended (admittedly miles away and very expensive) the difference in diagnosis and treatment was unbelievable - and they understood that I could not keep going back, so detailed a precise recovery regime for me, that I still follow to keep all my joints in good condition.

    NB The Rheumy who says you are too young to be having so many problems is talking rot. Some people are born with RA, and other conditions, and can be plagued all their life; plus, other issues - such as vit or min deficiencies - can swiftly exacerbate the development of such conditions, so that they develop early.

    It also might be worth checking out the possibility of fibromyalgia, as that went through my mind as you described your symptoms.

    Whatever, it needs to be treated with more concern, and you need a thorough check up for all other possible causes.

    Take care.

  • Hi GrittyReads.

    I am in U.S. (Kentucky)

    I just got my labs online from Friday. It shows my vit d is really low. (I had low vit d once before I was diagnosed with PBC but I didn't have this muscle pain.) My alkaline phosphatase is higher than it usually is too, even my cholesterol is high. I don't understand that as it has been good until this test. I am going to ask about the B12 when I see my GP on Thursday. I am also going to look into other rheumatologists. Thank you for the advice. This site is a blessing. I had never of heard of PBC until I was diagnosed and this site has helped so much. Hope you are having a pain free day.


  • Hi Lisa,

    I do hope that the Vit D result means that you get things moving and fast ... ! Also that you manage to get the B12 checked as well as anything else that seems necessary. ALP can fluctuate, but its rise may help you to demand further checks in case there is some 'knock-on' effect going on, because of something else that is out of balance.

    As you are in Kentucky it's not much use to tell you that my physio of choice is in Richmond, London-ish (I'm in Devon, UK). However, with luck some PBC folk closer to you may see your post and get in touch!

    I have not seen my physio for a long time - but I know they are there if I need them, Generally I'm okay and not in pain. Like badpiglet I don't have PBC yet (or am asymptomatic) and I may never get it, but the physio helped me get my knee back to skiing strength, and since then I've found a local osteo who can tell me if I'm letting things slip and need to do more work on any area. I'm very loose jointed (although not actually hypermobile) and it means that if I don't keep all my muscle strength up - across all joints - then the joints get a bit floppy, so there is wear and tear and pulling and movement in places where there shouldn't be. After the physio had done her magic, I followed her advice I found a 'really good' pilates teacher, and gently, slowly, built up a whole series of moves and exercises, that keeps everything just tight enough and in the right place. I do gentle stuff at my gym too, and my trainer is great at spotting if anything is going a bit out of line.

    Hope you manage to get a good response on your case, and that the pain is soon in the past.

    Take care

    Gritty xx

  • I have scoliosis and also a lot of fusion through my spine thanks to arthritis and like everyone tried everything in the book! A turning point for me was hydro therapy through physio dept then onto modified pilates at hospital. Initially I barely could get on or off floor but it has helped probably as I look more in alignment now and less like I'm away to fall over to one side. What helped was meeting others at these sessions and sharing our stories. I have found a Tens machine helps a bit but only if on constant muscle massage mode - burned through a few but any port in a storm especially if already maxed out the painkillers. I also practice mindfulness to help with broken sleep as find I wake every couple hours but this helps to nod off bit quicker between. I have had to radically change my job and lifestyle which I had hard time accepting as we programmed to feel guilty if we not always doing or on the go. Putting yourself and health first without feeling guilty now there's a challenge! Hope you find your own box of tools soon that give you some relief and comfort. My hubby calls my hand bag my toolkit as I carry my meds,tens machine and even inflatable cushion with me encase have to sit on rubbish chair somewhere. Anymore stuff in there and I'll need a trolley on wheels! X

  • Hi, I just sent you another reply, but I think it's come out under someone else's message to you, so you may not have got an email notification.


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