What do other people find helpful for bone ... - PBC Foundation
What do other people find helpful for bone and muscle pain.I have pain in my hips and legs that keeps me awake at night. Brufen doesn't help
As far as I'm aware we shouldn't take drugs like ibuprofen - NSAIDs. Can't remember why but they are NOT good for the liver.
I get cocodamol (30mg codeine & 500mg paracetamol) on prescription from my GP. I also get codeine on its own. I have to take 2 cocodamol at a time, usually two to three times a day. Sometimes I also take codeine as a top-up in between if the pains too bad.
I have Oramorph for liver capsule pain & biliary colic, & my GP told me that I can take it for the bone/muscle/joint pain if the cocodamol doesn't do the job. But I try not to take that, unless its 3am & the pain is too much.
Thanks for that,I wasn't sure if paracetamol should also be avoided.I will have a word with my GP and ask her to prescribe me some cocodamol .Does your pain come and go or is it there most days.Mine seems particularly bad at the moment but I'm not sure why
I was told we cant have any drug stronger than paracetemal and only four a day,,, i was prescribed a medicine for my throat with codine in two weeks ago and was rushed in Hospitial 20 mins after taking it the pain was unbearable in my liver... its still not settled down proper yet... Bev x
My GP prescribed paracetamol with tramadol as a top up but the tramadol gave me a funny head. Now I am on co-codamol and for when times are really bad I take an anti imflammatory naproxen as a top up.
I also find the pain relief gel rubs like ibuleve or voltarol rubbed into the joints along with a heat source like a wheat bag or hot water bottle help.
Hope this helps. Good luck
Thanks for your reply,I have been using the rubs and hot water bottle,but with little effect,I think I will definately need to try the co-codamol,just so I can get a good nights sleep !!
I take co-proxamol for the pains. I read somewhere that we should avoid paracetamol and was going to speak to my GP about it next time I visit him.
I was a bit worried about taking paracetamol too,but I have just read an article yesterday that states it is ok,but in smaller doses.Rather than the maximum of 8 tabs in 24hrs we are recommended to have only 4 tabs in 24hrs.
i too have been struggling since the begining of the year with the pain in my back, hips and legs, i take naproxen for my osteoarthritis, paracetemol or co-codamol if needed and volterol gel,. the gel seems to work better than the rest, and i think that the weather could be affecting the joints etc. trying to walk through snow & wind etc. means we walk differently and this causes more pain.
I take tramadol or paracatamol depending hoow bad it is. Your GP might presribe a muscle relaxant such as amitriptyline if your muscle are bad - this also acts as a painkiller and fine with PBC.
Thanks every one for your advice,I hope to see my GP next week to try and sort things out.
fudge13
I was told by my gastro to take ibruprophen and was then told by my GP not to take them and to take paracetamol with Tramadol top up. Tramadol also sends me a bit bonkers and paracetamol and ibrupropfen make me feel ill, so at the moment I just take a valium and try and knock myself out if the pain is really bad. I went out shopping with hubby yesterday and today can now hardly walk for the pain, i feel like one knee has been twisted on the knee cap and my feet are like two blocks of solid concrete, toes won't bend and the balls of my feet are aching like mad.
Can't understand what causes all this pain.Had another bad night ,was woken up with the pain at 2 am and couldn't get back to sleep.Had a hot water bottle on each leg to try and help.Unfortunately had to get up early for work today,so am exhausted now.Will try all these suggestions until I can find what works for me.
Thanks again,fudge13
I also take amitriptyline (20mg) at about 7pm as it helps me sleep. I keep my trusty hot water bottle handy too! It's definitely been worse since the weather got colder.
I have also suffered with hip and lowerback pain for 2 years. GP gave the usual paracetamol and ibuprofen gel, suggested it was osteo arthritus ad sent me for an x ray, which showed hip and lower spine to be in fairly good condition so then suggested it was a trapped nerve. In sheer desperation for a nights sleep I visiteed a chiropractic who is also a craniopath.after my first visit I slept solisly for the next 3 nights. I am now due to go for my 3rd. visit, yes I still get a dull ache but very little of the severe pain which I was experiencing.
Sadly the treatment is not covered by NHS and my first treatment which obviously included assessment was £100, further visits which currently are weekly are £45.00 I am a pensioner so do have to watch my money but this at the moment is well worth every penny it is working for me.
Good luck and whatever you do I hope that you soon get relief.
Thanks for that advice,I have used an osteopath in the past for lower back pain when I was younger, which helped at the time.Sometimes we forget all about the complementary treatments that are available.I think I need to look into these a bit more too as I'm a bit worried about some of the side effects that medication can have.
Thanks again,fudge 13
I have pain from PBC; arthritis; FM; scleroderma; migraine and Raynauds. So I take 8 x 15/500 Co-codamol + 1 x 90mg Arcoxia + 2 x 100mg Tramadol. Also take Pizotifen - a slow release drug + Sumitriptan for migraine. I take anti-depressants and for both depression and sciatica. - I'm a walking Chemist for sure. Take a lot of ther drugs too but sure gives me something to think about. 
hello , I have bad pain ,aches in my back,hips & crunching bones in my neck, Im clear of osteoarthritus, my bones scan was good , just lack of vitamin D so on calcium&vit d tablets aswell as ursfo. Had problems with my back for 25 years(im 41) , had physio on it , anit flams but its still there, not always in pain but i struggle with my back and now my neck sounds like a bowl of rice crispies!!!(snap crackle pop) im due to go for xrays on this as im really worried have limited movement in it , feels stiff and the crack and grinding noise all the time i move it!!! ..........but i was told by my specialist that fybromalagia is a problem for people with PBC but there are no official test to confirm this. maybe ask your Dr if this could be a possibility.
I now take co codamol (from the chemists) which helps as ibprofene is not good for the liver!!
I think I have just learned to cope with it and push through the discomfort and pain which is wrong really
I take paracetamol & when the leg, back, neck & hip pain get really bad I take 15mg of codeine (upto 4x a day) - & am finding it has really started to help.
Hot baths are good too & in fact, I bought myself a small (3 person) hot tub in October which is great to relax in at the end of a long pain & stress-filled day
