Bone pain.

[zipitydoo]

I am getting awful bone pain in my shins and lower arms. I also suffer with fibromyalgia and have it in my muscles aswell. Just wondering if anyone else suffers with bone pain and if you have found anything that helps to reduce the pain.

[TracyLou]

I do get some pain in my limbs but don't know what it is. I have been to see the gp before but they are very vague so I don't bother going back.

[kaywire]

I get awful bone pain in my shins, arms and shoulders and no one seems to have an answer. I have just changed doctors today - so watch this space!

[Val02]

Hi i get the bone pains, joint pains and muscle pains in my arms and legs. I do see a rheumatologist for this but I dont think he really knows why PBC causes these symptoms. I just get a depo-medrone injection and see you in 4 months, this can make it a little better for a while but it soon returns.

The only time it really feels any better is when I go on holiday and lie around for 2 weeks in the sun - unfortunately you cant get this on prescription.

[LindaRose]

The best time of the day for me is lying in a hot bath before I go to bed ! the only time I am totally pain free and the bonus is a decent nights sleep

[Annflanagan]

hi, i also get bad pain have tried every rub, gel you name it the only thing works is pain killers, iv now started doin one sun bed a week a lie down one, i have built the time up to 8 mins, i find that a really great relief, just another note does any one suffer with kidney inf, im on my ninth in two and a half yrs, before pbc never had one

[Jgreen46]

My electric blanket is my best friend it eases all my aches and pains

as for GP one told me I have gall bladder problems and not to drink ha ha just said ok and left

[zipitydoo]

I must be extra strange then. From your posts the warmth seems to help you. I get more pain in my shins when they do get warm and more relief if I let them get cold.

[EAJSWW]

I too have had bone pain for ever.. well it seems like that as i certainly had bone pain in my ribs, pelvis and long bones when my eldest was a baby which was 17 yrs ago, 7 yrs before I was diagnosed.

I have been seen by a rhematologist who prescribed a course of acupuncture which gave very limited relief. he diagnised me with FM too, I have used patches to help with localised pain when it gets really bad but to be honest nothing really helps.

I dont eally get any relief with the warmth BUT it does get worse when i get cold.

I now use self hypnotic relaxation which helps but I have just now gotten used to it. Thing is even if i dance, walk or whatever I suffer the following day and people dont understand what being in constant pain is like.

Can i ask, those who are in constant pain, do you struggle more with accute pain when it happens?

For instance the other day i stubbed my toe and I was crying with the pain.... I sometimes think that when we are in so much pain al the time we learn to cope with it, but when we then hurt ourselves, even if it is only slightly, that pain can sometimes be massive as we are already using all our energy to dampen the constant pain... anyone else have this?

[Val02]

Yes I find the slightest knock is incredibly painful out of all proportion to what it should feel like. I also bruise very easily so the slightest knock will result in bruising and swelling. Sometimes I hurt so much I cant even bear the weight of the duvet on me. I suffer chronic pain day and night and sometimes it is so bad it keeps me awake all night. I used to take painkillers but I developed a reaction to them. My doctor prescribed Amitriplyline to take before I go to bed to help me to relax and get off to sleep, which it does but doesnt stop me waking at THAT time in the middle of the night.

I have had steriods for the pain, physiotherapy and acupuncture. I now do my physio exercises everyday which help to stop my neck and shoulders getting stiff. I tried acupuncture which did actually stop the pain for about 2 months before it returned. The trouble was the acupuncture was quite painful in itself as the needles went into my neck right up to the base of my skull and it was quite expensive as well for short term relief. BUT i would go again if I get desperate.

I went to my local hospital for a neck management course, and we learnt how to manage our pain better, (obviously depends on the day). We also learnt relaxation techniques which actually work quite well in detaching yourself from the pain.

So yes I know exactly what your saying......

[EAJSWW]

Thx Val,

its nice to know of others who have experienced this. (well not nice for you obviously)

i went to a pain clinic and the aneasthetist told me that wide spread pain is often because when you are in so much pain, the nerves eventually just begin to misfire and become very irritated. hence the wdespread pain.

there is a joke in my house with my children about a penny.... A few years ago, I had bare feet and dropped a penny.. yep just 1p and it hit my middle toe.... I literally screamed with pain... was rolling on the floor and crying.... The kids didnt know whether to laugh or cry... after all it was a penny! Looking back it was funny! But at the time excrutiating...

The other day a toddler dashed passed me and hit me with an umbrella... I winced and the dad looked at me tho I was so over reacting... I also brusie easily... so these knocks and bumps cant all be pyscologically painful as I always have brusies even from slight knocks.

Sorry zipitydoo didnt mean to hijack your thread. x

[Val02 in reply to EAJSWW]

At the hospital physio dept they told me the constant pain is caused by the pain gates to be constantly open and the pain signals can continue after the cause of the pain has gone...hence the reason they suggested acupuncture to interrupt the pain cycle.

Just as a footnote.. my children call me the Princess from the fairytale The Princess and The Pea!

[sharon7716]

it's the constant aches and pains, i was told by dr he could give me something but he won't because it can damage the liver and while thats working with the urso, you can live with the pain but not without your liver, i wonder if he would feel the same if his body was aching 24/7???? Most days it mild and destracting myself helps on those days.

[Maureen25 in reply to sharon7716]

I know how you feel, I also do not having anything For the pain because of the liver. Hot water bottle is my friend.

[sjr1]

I have suffered with really bad muscle pains for years in my back, done physio, taken diflofenic , even went to the gym to lose a bit of weight and help strengthen my muscles , but just made things worse, and a strange sensitivity about my skin if I touched the area it was like electric shocks of cold going through the area.

I gave up going to the doctor about my back and just suffered, it's not constant pain but when it flares up I'm walking half crouched and like a cowboy.. My body feels like a 200 year old woman!! Lol washing my hair over the bath can leave my back in agony, or even just picking up something off the floor!.

Also for years I have noticed myshoulders are stiff, neck is verystiff and when I move it I can here crunching of bones , had a bone scan for osteoporosis and that came back ok!

So I just grin and bare and bare it now. I regularly walk with my dog and ankle pain n swelling has started, sometimes I feel what's the point in going to the doctors , I just get told take painkillers!!!

I was only diagnosed 2months ago with PBC , so still taking all the information in.

But reading the post has helped me a lot .

I'm at the specialist tomorrow about this , as I have spent the last week nearly doubled over and walking like a cowboy!! Lol will let you know what he says, ( going armed with this info)

Once again thank you for this site it's just a shame there is no live chat , so we can chat and give support like that !! Maybe worth thinking about!!