PBC and fibromalgia

Have had PBC for over 10 years and for past few months have been experiencing severe pain in shoulders, wrist, fingers and big toe in the morning which although subside a bit during the day are still reasonably painful. If anyone else out there suffers with fibromyalgia is it possible I have developed this and is there any treatment? Have a GP appointment next week but would enjoy hearing any personal views first. Thank you x

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  • I just had a appointment with a neurologist because I had a rheumatologist diagnose me with neuropathic pain, no tests or even a referral to a neurologist. My family Dr referred me to the Neuro Dr. I was having serious issues getting out of bed every morning. Plus, depending on my activities, I would have pain from head to toe throughout the day. The Neuro Dr was trying to examine me & I just cried because everywhere she touched me was painful. She stopped to explain that she was not trying to hurt me but needed to do the examination. In the morning as soon as my feet hit the floor they felt as though they were on fire & my joints hurt so bad. It would literally take a few hours for me to be able to work all the links out but some days I just stayed in pain. The Neuro Dr says she felt that I did not have neuropathic pain but fibromyalgia. She started me on the generic form of Elavil (amitriptylin) 25mg, 2 a couple hours before bed. I can say now that I feel this treatment is working because Im able to actually get out of bed without my feet being on fire. I can tell you that fibromyalgia is more of a touch sensation than anything. It hurt to even be lightly touched or if I came in from the heat outside into a very cool room, the cold hurt my skin. Almost like it was hurting my bones, all the way through. I don't feel that this is your issue, but I am not a Dr either. Have you seen a rheumatologist? RA is a likely candidate for us PBC'ers. It goes hand in hand for most of us. I hope this is a little help. When you have your appointment ask for a referral.

    Stay strong❣️

    Shannon

  • I've had pbc for almost 10 years and i also have fibromyalgia. My pain is exactly like you are describing. On a lot of days my husband can't even hug me because of the pain.

  • This type of pain is awful😞😟

  • Thank you Shannon. The doc seems to think it is polymyalgia and sending me for tests. Pleased that your condition is responding well to treatment. Julie

  • Thank you, praying that they figure your out soon.

    Stay strong❣️

  • Hello I have been seeing a rheumatologist since before they diagnosed pbc, in fact they found it!Initially they diagnosed fibromyalgia, and then they found I have gout.The gout was treated but I still have severe episodes of widespread muscle and joint pain.I am now seeing a rheumatologist again they aren't sure what it is now possibly a type of vasculitis or a rare autoinflammatory condition.I would suggest you ask to see a rheumatologist to get these symptoms looked into.I have read aches and pain can be related to pbc but sometimes it can be something else.I hope you get some answers and help.

    Jane

  • I was diagnosed with fibromyalgia after suffering widespread bone and muscle pain even laying in bed hurt. I also have dreadful stiffness when getting up in the mornings and during the day if I sit down too long. I questioned the diagnosis at the time as I didn't feel it was a correct. My understanding at the time was: there are other symptoms with fibromyalgia as well as long standing pain and at the time I didn't have any. However I was given the medication amitriptyline and that did seem to help get my sleep pattern back to something like normal.

    After now suffering a host of other symptoms including fatigue ( gastro adament my fatigue is not from my PBC ) she recently sent me back to rheumatology for further investigations for other autoimmune diseases.

    I saw a different rheumatologist this time and thankfully I don't have another auto immune disease all bloods except vit D came back normal.

    After going over my written list of symptoms low and behold she disagreed with the fibromyalgia diagnosis. She believed it was a functional disorder coming from the brain and the treatment !!! Good old amitriptyline.

    I questioned this as well and asked her out right if she was saying I had CFS ( chronic fatigue syndrome) her answer " I don't like that diagnosis". So what do I have... who knows but at least it's not lupus or fibro. That's my fibro story, I feel like I go around in circles so hopefully you will get some clear answers.

  • Have you ben checked for polymyalgia rheumatica? The symptoms you describe sound very similar by those suffered by two friends, who were eventually diagnosed with this.

    It's worth asking in case it hasn't been though of.

    Hope you get some answers - and relief - soon,

    take care.

  • Looks like it! Tests next week. Thanks for your reply. X

  • Thank you to everyone who responded to my post. Feel better armed now for GP appointment. X

  • I have PBC, Scleroderma and Fibromyalgia and that does cause pain along the clavicals, hips, hands, feet, everywhere really, it is worse in the mornings, the only thing I have been given is Amitripiline this helps me to sleep and takes the edge off the pain and I take 3 Co-codamol tablets during the day.

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