Cannot get any reliese from the muscle and ... - PBC Foundation
Cannot get any reliese from the muscle and bone pain at the moment it's my 10th day on urso help
Ah Karen my heart goes out to you... I too have had constant bone pain since my diagnosis...
Has the pain only come on since starting Urso? If so you need to speak to your doctor....
The URSO will not alleviate the bone pain, but unless your doc has said otherwise, you can take paracetamol. Does your doc know about the pain you are in? You can ask them to refer you to a pain clinic... I have had various treatments including accupuncture, nothing has given total relief for me but we are all different....
Where is your pain? x
No I had this pain 18 months ago before I was diagnosed but it went away then it started back in my heels and feet about 3 weeks ago now it's in my knees leg bones hip hands and right arm and shoulder the neurologist gave me gabapentim 100mg 3 times a day that's when the pain went away but it's back and I don't see him till January x
Hi karenlesley
I get flare ups like this too why I don't know...I can go for a few months with manageable pain then all of a sudden out of the blue I get a flare up which can last anything from a couple of days up to a month.
Paracetamol didn't touch the pain for me so my GP gave me co-codamol and an anti inflamitory Naproxen to use in between when pain unbearable. I find heat also helps....I drape wheatbags over the joints because you can wrap them around, otherwise use hot water bottles, and also gel rubs like voltarol/Ibuleve on the joints for the desperate times.
Had you been diagnosed with PBC when the neurologist gave you gabapentin? If so and you found they helped you previously, you don't need to wait until January as your GP can prescribe more of them for you.
Hope you get some release soon!!
Hello karenlesley.
Sorry to read about your recurrent pains.
The only thing I can suggest is if you have only been on urso for a short period of time to stick with it and it is possible that start to feel much better with passing time taking it and this problem alleviates somewhat. That is if it is connected to PBC and you haven't been giv en a diagnosis of this already.
Out of interest did you have Vitamin D level checked? This deficiency is connected to bones and if lacking it could be adding to your symptons. Just a thought.
I think the problem with bone pain, is that although many of us suffer from it, the docs don't seem to know what causes it.
I would defintely ask to see a pain specialist as they usually have access to every sort of pain relief some unconventional and as specialists can also work with your liver specialist to ensure your livers safety with anything they prescribe x, Hope you are feeling better today x
Hi Karen, I too suffer lots of bone and muscle pain - jaw, neck, wrists, fingers, hips, knees, ankles and worst of all, my feet. I wake every morning with severe foot pain...it feels like i've sleeped walked for miles. I have to sit on the end of the bed for a few minutes, massaging and wriggling my feet before I can walk on them, and when I can finally stand, I walk to the bathroom like Ozzy Osbourn - not a good look! : / I have seen a few doctors but no one seems to know what is causing it, so now i'm waiting for an appointment to see a bone specialist.
Good look Karen and hope all goes well.
Ange
No I hadn't been diagnosed with pbc when I was given gabapentim only found out 3 months ago it took docs 4 years to find out I had pbc and I'm the same when I get out of bed feet so painful and very painful feet and legs if I walk for more than 30 mins supermarket weekly shop is a nightmare no energy left to put the shopping away or anything until I've laid down for 1 hour life is a nightmare how do I sort Xmas out for my family and it is expected so fedup how do you all do it please tell me give me some ideas don't know what I'd do without all of you to talk to xxx
feel for you, sitting here just now and knees are throbbing, I have pain in the same areas as you mentioned, I take diclofenac 50mg x 3, gabapentin 300mg x 6 and up to 8 dihydrocodeine, theres days when theses meds dont even touch the pain. Hope you get relief soon, the pain can pull you down.
Hi
I only started with bone pain this last few weeks and its terrible, mainly in my arms and wrists. I have started to take calcium and vitamin d coupled with 20 mins of weight bearing exercise per night. Too early to tell if it will work, im going into hospital on Wednesay so plan to ask a lot of questions then. I hope it wears off try and carry on as normal and dont give it the attention it is seeking. Cheers, Hannah
