hi all

[Clairemumov5]

hi im just wanting to know if any of you get pains in your hips im getting it a lot lately and im finding that doing things r getting hard with it i get a lot of pain in my hands too xxxx

[nomorepies]

Hi Claire,have you had your vitamin D levels checked, you can get hip pain if your levels are low.

[Clairemumov5 in reply to nomorepies]

No but I do take vitamin D that the hospital give me but the pain is getting really bad I went for a scan on my hips n spine on Thursday so I have to wait for results n if there's nothing on that then I don't know what to do next I'm only 31 n my hips feel 81 it's really bad some days x

[Hidden in reply to nomorepies]

I had an on-the-line reading for borderline Vit D deficiency back in late 2010. My GP at the time made it out to be really significiant but the hospital consultant when he wrote said my Vit D was 'a bit low' but he then went on to say that he didn't at the time recommend any supplements.

He did say that given I'd not been out in the sun much (I always seemed to be at work when the sun was at its highest and here in England we are lucky to have some!), to try to utilise the sun the following yr and they'd do a re-check. My re-check in 2011 showed me to be perfectly normal.

It's said that even people without any health conditions can be slightly low with Vit D in England particularly during the colder months but then with that boost from Spring the levels go up again. Unfortunately for us with PBC and knowing the best way to manufacture our own Vit D with the sun on our skin, those colder months probably create havoc for us all.

[Alaskanbutterfly]

Yes bad pain in my hips and hands also! Also my shoulder! Dr said when liver isn't processing the toxins back up in your body and cause swelling and pain. I have cysts in my hips now also he said those are from irritation etc. I have to take a tramadol just to walk around the shops. I'm sorry you hurt too but you aren't alone if that helps any :/

[June9961]

Yes bad pains in hips, knees, ankles, shoulders and on really bad days feet, toes, fingers and even teeth. All over really. I have had a dexa scan but it just shows I dont have osteoporosis although I do have arthritis. All I was given was Calcichew Forte and pain killers. Doesnt help though. Some say its to do with PBC others say its could be just my age (58). I used to do a lot of sport, running, jumping etc and martial arts. Now I cant do anything. Sorry if this is not much help.

[Hidden in reply to June9961]

Hello June9961.

There is apparently a diet you can follow to alleviate symptons of arthritis. I have a retired friend who suffers badly with arthritis. She is struggling to lose weight as she informed me that excess weight causes more strain on the joints understandably.

My friend struggles with exercising and even walking due to the fact she had to have her heart checked out a couple years ago so has to take it that bit easier.

There are certain foods apparently that are naturally anti-inflammatory and I think I'm right in saying that licorice is for one. (Tho' not good to take a lot if one has high blood pressure as it can raise bp.) I seem to think that tomatoes were a no-no but it's been awhile since I found some info now and gave it my friend and I cannot think where I got this info from now or I would have been perhaps able to add a bit of better input.

PS Have you tried taking cod liver oil capsules at all?

[Universal44]

Feel for you all :(((... Just having a cuppa and taking my tramadol,shame the first thing I think of after opening my eyes is right how bad is my body pain today???... I'm same as you guys pain in all the same places and it's seriously wearing me right down big time....love to all x

[Hidden]

Yes Vit D is down to bones but also as I have found out, you can start to have difficulty walking if you are Vit B12 deficient to a certain severity. I wasn't aware until a couple days ago that you can have Vit B12 deficienct anaemia.

I had my repeat last wk., LFTs as expected (2 slightly up, 1 slightly down) and the FBC did throw up a two point below normal for the HB count. I'd been testing one point below for the last 2 and half yrs and I know this can be normal. Meanwhile I've been seeing ENT in the last 18mths due to nosebleeds that started several years prior but then seemed to be more frequent. Only in Sept when I had the 4th cauterisaton (chemical one) has this ceased in the last 4wks. I did have a further ENT appt last wk., all looks to have healed finally (had a small inside nose graze, reason for the nosebleeding).

Knowing this, it could be a case the HB is low due that problem but the GP went about it in an odd way to me last wk. Got a call from another GP in practice, not the one I saw in May as a new patient who decided on a sort of PBC plan. This GP who called, she wanted meto take iron tablets for a month (well 28 days as that seems a month now!) and then have a blood test of all the bloods including the LFTs. I disagreed with the LFTs as can't can't see how 4wks will make much of a difference to those results. In the beginning there would have been but mine have slowed down and I've now been on urso for 3yrs tomorrow.

This all left me confused so I kept my appt on Friday with the one I saw back in May. She saw my point in saying that wouldn't it be better to find out what the ferritin (iron) level is first if it is thought I am mildly anaemic. There is also a request for Vit B12 and folate (these 2 have always been normal so far). GP reckons probable mild anaemia but looking like could be iron deficient one. These GPs don't half beat about the bush! I was the last one in morning surgery, nurses were still about and the GP could have got a nurse or even herself to take the blood there and then but no I had to make an appt to go back tomorrow. They don't half waste time! But then again it's apparently not something urgent, moreso due to the fact that I've no symptons whatsoever of any of these deficiencies at present.

Vit B12 though is a vitamin that can give you a boost. I am sure I am right in saying that if you were to have an injection of this vitamin if deficient then you feel quite energetic for awhile.

I find this PBC can be a bit complicated at times due to the fact that with this condition, we can struggle to absorb certain vitamins (and probably minerals) and that in turn takes an effect on us.

[SC49]

YES - it's so bad sometimes that it wakes me up at night. And normally NOTHING wakes me up at night. I've asked about vit deficiencies and anaemia but apparently I m not deficient in anything.

I have a lot of joint pain and bone pain - usually it doesn't bother me too much.It's just there in the background. But the hip pain when it comes is very sore

[June9961]

Hi all, My greatest wish, as yours I am sure, that they would hurry up and find a cause and then perhaps a cure. More and more symptoms appear and the one theme that runs through all this is that it gets us down. It would also be wonderful if GPs and Consultants were also more aware of this illness and perhaps understand more what we are going through. I moved to an new area in July and had to educate my GP. My other worry is that my Consultant is going on maternity leave soon and her boss, who would normally take over has taken a year out to spend time with his family. All this makes me feel very alone and frustrated that I am not as active as I used to be. Thank goodness for this site.

[Cecile64]

Hi,I started doing yoga and it takes the pain away for the day,I have to do it everyday ,but it works

[highwood]

HI all, I get hip, hand, wrist and finger pains, sometimes so bad I am in tears, been off Urso for 5 weeks and have found that the bone pain in my legs mainly shins has subsided, I feel so much better being off Urso. Not sure what damage has been done, seeing consultant Christmas eve. On vit D for osteopenia. Keep smiling and God Bless you all. Sue xx

[Shirleybutler]

I get pain in right hip sometimes and am mystified about it always think arthritis though?

[0137kaz45]

Pain.. .. has me in tears some days........ but what can you do.... take the pain killers and get on with life..... some times wonder how i get through work, shopping, cleaning ect..but i manage..... we have too...... life goes on people..... chins up we are alive xx

[janine1086]

Im getting alot of Pains in my knees and occasionally my ankles