Well guys, read a lot about muscle pain on here. I suffer from joint and muscle pain, in my legs and arms. But also in my face . I have been getting electro therapy on my face, but it's not doing anything. I just had my check up with consultant on Mon, after she cancelled my one in Dec, as she decided she needed a holiday!!!!! anyway more bloods taken, as checking I am not developing other auto immune conditions. I know have raynauds disease in my fingers and toes.... she also says muscle and joint pain is not related. but too many of us suffer from this..... getting fed up of doctors not knowing enough about this... we are in a generation where research can be carried out, why can't the consultants be more sympathetic????????

31 Replies

  • Hi posh

    Can you describe your facial pain I have this really bad x

  • when I yawn it is agony, like a spasm, the pain goes right up into my ear and up the side of my head. The pain is really bad. I can't open my mouth that wideeeitherso have o cut food really small.

  • This sounds like TMJ pain. Just saw an Ear, Nose, and Throat Dr. who told me that this could even be the reason for me having vertigo. I have had pain lately at that joint which is right at your ear. I make rice bags, microwave them, and lay there. Since it turns out to be a moist heat it helps some. Years ago, I had this problem and a Neurologist said it was a neuralgia coming from this joint.


  • Please excuse my ignorance but what is TMJ?

  • Temporomandibular joint disorder, TMJD (in the medical literature TMD), or TMJ syndrome, is an umbrella term covering acute or chronic pain, especially in the muscles of mastication and/or inflammation of the temporomandibular joint, which connects the mandible to the skull. The primary cause is muscular hyper- or parafunction, as in the case of bruxism, with secondary effects on the oral musculoskeletal system, like various types of displacement of the disc in the temporomandibular joint. The disorder and resultant dysfunction can result in significant pain, which is the most common TMD symptom, combined with impairment of function. Because the disorder transcends the boundaries between several health-care disciplines — in particular, dentistry and neurology — there are a variety of treatment approaches.

    The temporomandibular joint is susceptible to many of the conditions that affect other joints in the body, including ankylosis, arthritis, trauma, dislocations, developmental anomalies, neoplasia and reactive lesions.[

    This is from Wikipedia


  • Yes I have is quite different from my fibro pains or PBC pains whatever they are...have been in pain for a week..on antibiotics cos of tooth problem but the TMJ is in from my jaw, to ear, up to temple and back to shoulder. This came on aftera 30 min dentist apointment.

    Possibly Posh you do have this as it doesn't sound like could also be the trigimenal neuralgia which is extremely painful. There is a lot of mix up over jaw and face pain.

    Have you been to a dentist to check on this?

    If anyone here is thinking of having teeth whitened through the dentist..trays youput in at careful, all this current problem has been from that....have has to stop and waste UK 350 pounds and now need to pay 600.00 for a proper root canal!!

    Good luck Posh and hope you find a solution.

  • Thanks Magnolia for the info. I hope you did not mind me asking its just that I get quite confused with all the abbreviations used on the forum.


  • I don't mind, I don't know much, but some of the things, I've already experienced. I always think maybe something I add might help someone.I'm 64, and by now I've had been there, done that with a lot of these things.Lol!

  • Wheat bags are so good...especially moist heat....they help everything that aches in face and back!

  • I swear by wheat bags myself too....they are so easy to mould around your joints, elbows, knees, shoulders, neck, face etc.

  • hi Magnolia, they thought was TMJ to start with, but it's not not that.

    I am back for more treatment on wed...

  • Hi there the reason I asked you earlier is this was the first symtom I ever had and what led to my pbc diagnosis was the awful facial pain every time I googled my facial pain it came back with the description of Sjögren's syndrome I had been to see two maxiofacial surgeons who after x rays and tests said it wasnt TMJ it then spread from my parotid glands by my ears to the glands under my chin I was diagnosed with sjogrens by an Ent doctor my bloods are negative for sjogrens but every time I eat I'm in terrible pain and my mouth becomes stiff I've spoke to many sjogrens people who have the facial pain funny enough I had read about pbc being associated sjogrens but thought no not me it was me asking my doctor to run other autoimmune screen on my bloods that came back with positive Ama and then my pbc diagnosis I get swolken lymph nodes in my cheeks head and face nerve pain very stiff mouth difficulty opening my mouth I lived on yogurt soup rice pudding and soggy pasta for months and didn't chew just swallow these foods it really helped I still eat this way now but have learnt to Mash up my food otherwise I'm in agony maybe you could try this see if it helps if it does then you could ask for sjogrens test hope this helps Wendy x

  • Sorry forgot to add that eating causes me severe dizziness to x

  • Hi there from Australia. I've just been diagnosed with PBC and stumbled across this site in my search for info. It has so far been a great revelation to me as most of what I've read from others with the disease relates almost exactly to what I've e experienced so far.

    I also have been getting quite bad facial pain when eating, but so far it hasn't stopped me, unfortunately :-) I've tested +ve for sjogrens disease, and believe that it is one of the many symptoms of PBC, from what I've read about it so far.

    As with many of the posters, it seems that these forums are much better for finding relevant information than from the GP or specialists, even though they have been excellent (in my case).

    This is my first post, and hope you don't mind someone from Aus intruding. l look forward to having more discussions with other Pbc-ers.

    Cheers, Dorothy

  • Welcome mardot

    One thing about this site it is open to everyone no matter where you are from. At the end of the day we are all suffering with the same condition...PBC... and sharing experiences and hearing how PBC'rs are treated in other countries will help us all in the long run.

    I am from South Wales in UK.

    Best wishes


  • Hi mumofthree, That was such a nice welcome to Mardot : ). I am from the US and always find medical information in the UK much more "informative", if you will. This is the only site I have come upon (in the whole world!) that really gets down into the PBC issues that people are actually discussing.

  • Hi PBCsince2012,

    Welcome to you also, thanks for your kind words. I hope you are well.

    I know exactly what you mean about this site, it has been an absolute godsend to me. When I was first diagnosed with PBC in Jan 2011, I had never heard of PBC, in fact other than having joint and muscle pain (which I was being tested for) I did not believe that I had anything wrong with me.... I asked the registrar what PBC was and what did it mean for me..... he told me I had an incurable disease of the liver and that I could have 3 years to live.... I was absolutely devastated. He gave me a Doctors information booklet on PBC as he did not have a Patients leaflet, and told me to search it out on the internet. All I could think of was that I would not live to see my children grow up, my youngest was 10 at the time. I did some checks on the internet but what I found scared me more and more. Over the next 6 months or so I was in complete denial,... I just wanted to bury my head in the sand, if I didn't think, talk or read about it, it would just go away. No one seemed to understand what I was going through...the ignorance and prejudice of others either that you must have a drink problem or that you are making it up if you say you are in pain or fatigued....I have never felt so alone in all my life....I hid myself away and became more and more depressed. Then one day I plucked up the courage to contact the PBC Foundation here in the UK and through them I found this site...the rest is history and I have not looked back since.

    I no longer let it bother me if so called friends and family who out of their ignorance have chosen to either judge me or even just ignore me as if I am a leper. No one wants to hear someone moaning but at least on here you are not made to feel guilty if you are having a bad day and have the audacity to mention it. I can count on one hand how many true friends I have left but can honestly say I do not miss the others as I believe I have found so many new friends on this site. We all have PBC in common so we all understand and know exactly what each and everyone of us is going through...

    Through the kindness, help, support and advise of others on this site I am now far more positive about the future....I have a life to live, I am determined that I am not going to let PBC get the better of me and make the most of each and every day.

    Best wishes, keep well


  • Me too

  • hi Wendom, gosh, I could have written what you just said. That's exactly my symptoms and the pain is in my ear, head and chin also. I attend the maxilofacial unit every week from electro therapy but it seems to be making it worse.

    I have heard of Sjogrens disease but didn't get realise what it was.

    They make you feel like you are making it up!!!!

    I visited my consultant on Monday and they have screened my blood for other auto immune conditions. need to wait for 2 weeks for results.

  • Hi, does anyone get swollen lumps that cause pain on their forehead and side of the eyes, they come and go and seem to move about, at the moment I have one in the centre of my forehead and it is painfull but in a few days it will move to another part of my face, I also get these lumps in the sides of my thighs at times and I have swollen glands at the moment. GP said not to worry about it and he doesn't know whats causing it. It's okay him saying not to worry but it's painfull.

  • Hi All, have a look at this link .

    It has a diagram which list everything you are saying and not uncommen with PBC.Most of these can just be PBC, but huge cross over systoms.My eyes are a problem for me and horrendous tinnatus and ear /jaw pain.

  • Forgive my ignorance, but I am in the US and don't know what you mean by consultant. Is that a doctor?


  • A consultant here is a specialist. We see our general practioner for (GP) then they refer us to a Consutltant(Specialist) Does that help??

  • I'm in the middle of seeing a Neurologist for vertigo, and dizziness. It's strange the first time I ever had veritgo, was ten yrs ago. Before this happened, I kept telling my PC I had a sinus infection. She said you don't! and made me feel like I was making this up.

    Finally a Neurologist said you have the TMJ problem with the neuraglia pain from it. I had pain for 3 wks in the back of the same eye also, and a change in vision.. With this new episode of veritgo, I'm dealing with pain there, ear ringing and dizziness, after the vertigo. It's all kind of similar to what the rest of you are going through. The moist heat helps alot, when it acts up. I don't have a problem eating though.


  • I struggle eating, yawning, laughing.... feeling bit crap with it all. I think is there a day I will feel great, but not yet!!!!!!!

    thank you guys for sharing your own thoughts, much appreciated. I use this to sound off as hate complaining to my hubby all the time...

  • well guys, consultants have injected my face yesterday with Botox, apparently to try and relax the muscle . It takes 24-48 hours to work, so fingers crossed!!!!!!!!!!!

  • didn't work :((( and just had seen on load LFT 's and MRI, and my LFT' S are very high again, so getting worse:(( every muscle and joint ache, esp walking up stairs and down them.

    it's like my body is fluey all the time.

  • Hi posh, Sorry to hear the Botox did not work for you. My father had Parkinson's disease and used to get Botox treatment into the muscles of his face to ease the pain he used to experience due to the constant movement of his jaw. The first few treatments were not completely successful until they were able to pin point the exact muscle area and nerves that were causing the pain and after that we didn't look back. His jaw would stop shaking alleviating the constant pain and dribbling.

  • Sorry forgot to mention, the Botox treatment was repeated every 6 months and would last a good 4/5 months.

  • mum of three, thank you, I was back today, and they have referred me to surgeon the now... at the end of my tether!!!!!!

  • Hello all ( glad I'm not the only one) !!

    I get ragging pain in my teeth/gums. At first I thought I was going to need a root filling as the pain was as intense.

    I went to the dentist and he said all my teeth are fine. He then felt around my gums and hit my muscles which sent me reeling. (I don't think there is any logical reason to this.) The pains when I get them, can go/ be in most of my teeth/gums.

    Its very difficult to tell people about and even harder for me to comprehend as I haven't got a reason for it.

    I reach for the paracetemol on these occasions. Which is quiet frequent and relief my pain.

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