Shoulder pain

[P13jne]

Hi everyone, a few of you will know I’ve been struggling with severe pain in both my shoulders. I can’t lift my left arm above waist height and my right arm is slightly better but not much. I can’t sleep at night as I can’t get comfy as can’t lie on either side. So am looking like a zombie with black circles under my eyes. 🧟‍♀️🧟‍♀️🧟‍♀️

I had rheumatologist Yesterday after having xrays, they say I’ve now got oestoarthritis in both shoulders and starting in my fingers too.

I wasn’t sure if this was another side effect of PBC but it’s not. And not an auto immune issue either as it’s not rheumatoid which I thought it could be. I’ve to go have steroid injections on 9th March 🤢 can’t wait 🤦‍♀️.

So this is why I’ve been neglecting you all recently as I’ve not been on very much. You know I love you all 😉 Jane xx

[butterflyEi]

Hope the injections do the trick for you.

[P13jne in reply to butterflyEi]

Thanks my lovely I’m sure they’ll help. I just want to be able to lift my wee Princess grand daughter xx

[peace_lover]

Just a thought. I have PBC and osteoarthritis in hips,hands and feet. I also have an autoimmune disease called PMR or Polymyalgia Rheumatica. This causes severe pain and stiffness bilaterally in your shoulders and hip girdle. I spent six months before diagnosis not being able to lift both arms above shoulder level and in pain, both my hips seized up and I couldn’t get out of chairs or the bath. A blood test can give a good indication if you have it, you need your CRP and ESR levels checked to see if they are raised. The steroid Predisolone is usually prescribed with excellent results.

There is also a great forum on here PMR/GCA which is worth checking out. Just cos you’ve got one autoimmune disease doesn’t mean you won’t get another ☹️ and most of them we’ve never heard of before we get them...🤔

Hope this helps.

Susan

[P13jne in reply to peace_lover]

Susan thank you, I’ve never heard of that, I’ll be googling to see what I can find out about it and asking my consultant too. Hope you’re well my lovely xx Jane

[peace_lover in reply to P13jne]

Same here Jane. I had never heard of PBC either! having both gives a double whammy of fatigue but just have to get on with it.. It’s worth asking, even if it’s just to discount as a possibility.

[mjk98 in reply to peace_lover]

I have PMR we are working on different medication because prednisone gives me a very bad reaction I get a lot of body cramping and spasms from prednisone they are working on

medical marijuana although it's going to have to be in a pill form or whatever because my lungs aren't that good it's very painful PMR

[peace_lover in reply to mjk98]

PMR certainly is very painful and debilitating. I hope you find something that works for you.

[liver-bird]

So sorry you have been suffering and hope the injections soon relieve the pain. Let us know how you get on. Big hug. Diane

[P13jne in reply to liver-bird]

Thanks Diane, I’ll keep you updated on the outcome, it can only get better. Hope you’re well my lovely xx Jane

[mjk98]

Omg I am going through the same thing I had the injection I had to do MRIs of the cervical and lumbar which came back I have bulging discs and herniations started physical therapy the prednisone doesn't agree with me at all I get terrible muscle spasms and cramping ... I have an appointment with a neurologist I'm a mess my ESR rate is high and they don't know why I just had a bone scan I guess they were looking for cancer but thank God none 🙏 tested me 4 lupus I don't have that. I have a fantastic rheumatologist she's just not giving up until she gets to the root of why my sed rate is high yesterday my finger turned purple I don't know where the tip of my index finger is anybody else having these issues

[P13jne in reply to mjk98]

Thank you mjk, my whole journey started with raised lymph nodes all over. I had 3 removed from my neck which were clear, so I understand how worried you would have been I’m glad it wasn’t the big C. Anyway, after getting the all clear I was given the bombshell of PBC due to bloods and biopsy. This threw me. Not the outcome I was expecting. Along with under active thyroid.

My shoulders have been agony for over a year I’ve already had physio, which I’ll have again after the injections.

I’m glad you’ve got a great consultant. My rheumatology consultant has been great, wish I could say the same for my hep/gast consultant.

Hope you get to the bottom of your issues soon, take care my lovely.

Jane xx

[mjk98 in reply to P13jne]

Thank you Jane it gets depressing having all these doctor appointments on top of this I have terrible sinus issues which I attributed to the prednisone I have a mouthful of implants that are failing it's just been a horrible last couple years for me and the least affecting me is the PBC which started this whole thing ironic

[P13jne in reply to mjk98]

Ye it’s the side effects which are my worst issues too, hope you’re more comfortable xxx

[Hastingsgal]

Check they aren’t calcifications. This sounds exactly what I’ve had for years. It’s debilitating. I got it bilaterally in shoulders & hips requiring 6 procedures to break them up and remove them. They still grow. They have no idea why I have it but could be related to abnormal ph levels. I have GERD too, so makes sense? I would just ask the question to Rheumatology.

[P13jne in reply to Hastingsgal]

Hi hastingsgal, I had an X-ray and it is calcifying around the rotor cuff, was told it was due to wear and tear. I will ask the question though.

Hope you’re more comfortable my lovely. Jane xx