Painful back and ribs anyone else?

[mayday-Yeah]

I am having a lot of back and rib pain at min anyone else have that? Am waiting on transplant so at end stages of Pbc. Dr's have prescribed me quite strong pain relief but can't take them as they make the itch I get with the Pbc really intense meaning I get very little reprieve/ sleep if do give in and take a painkiller. So at mo using hot water bottles /packs to most painful areas and rest to control the pain. Very fed up with it. Dr did Xray of back say it was ok! Any help would be appreciated.

[Hidden]

Hello mayday-Yeah.

Sorry to read of your current distress that is on-going.

I have not experienced back or rib pain (I was diagnosed Dec 2010 with PBC when I was 46).

I do have the itch so can sympathise very much there, it is dreadul sometimes for me at night. Don't get much sleep most nights because of it but I do get the odd night where it isn't as bad but that's few and far between.

Now reading your post the first thing that stood our was when you say you are using hot water bottles again your painful areas and to control pain. I thought at the time wouldn't it better with something of a coller nature? Just saying that as for me I don't tend to feel the itch when I am cold as opposed to when I am hot. (Now it is warmer weather currently, I am finding as soon as I heat up and start to feel even a tiny bit sticky I start to feel prickly.)

Have you tried using something like the White Tiger Balm on your rib and back where it hurts before going to sleep at night? I have some in that can be bought over-the-counter for a few pounds. It contains menthol as one of the ingredients and it has a cooling effect on the skin thus causing a distraction from the itching in my case so I often fall asleep and get a bit of respite. Due to it being a rub there are no side-effects. Recently saw a programme on tv and it was experimenting with adults who had done strenunous exercise and it was found that although the areas were no different beneath the skin surface where they'd done the activity (the presenter had his thigh checked for heat), using either a hot rub (like Deep Heat) or a cooling rub (with menthol) it also had no different effect on the skin but gave the effects of hot or cold and a distraction to muscle ache.

I know in my case I find I can no longer use the Red Tiger Balm like I did occasionally in the winter months in a cold bedroom (no heating in the room) as the ingredients just caused me to feel even itchier (probably due to it containing cinnamon as an ingredient maybe?). I think I somehow managed a shoulder strain several years ago in a manual job and occasionally if I have been lifting or have my grandchild hold my hand when out and pull on my arm, I feel the strain following day, hence the occasion rub with the ointment.

Hope you get word from the transplant unit soon.

[mayday-Yeah in reply to Hidden]

Thanks Peridot will give the Red tiger balm a try. Where do u buy this?

[Hidden in reply to mayday-Yeah]

Hiya again mayday-Yeah.

Well I am in UK, not sure where you are. Forgive me if you have said previously on here.

In the UK Boots and also Superdrug sell it but other chemists more than likely do. Watch out as there are some cheap versions about. It is my husband who was brought up with the balms and we buy the one brand.

I'll message you further details of this Tiger Balm. Just looking at the packaging I have for the White one, the holder is Ceuta Healthcare in Dorset, UK.

[mayday-Yeah in reply to Hidden]

Thanks Peridot does it make u itch though? Prob am havin is the painkillers Dr is prescribing is good but side effects am getting namely headaches and increased itch are making me want to avoid them.

[Hidden in reply to mayday-Yeah]

Hello again mayday-Yeah.

I have found since I started itching and was informed I had PBC that the Red Tiger Balm did cause my skin to feel notso good.

The White Tiger Balm has a cooling effect and I've had no problems with that. I only use a bit every now and then on my right shoulder. I tend to feel a bit of ache the following day after lifting or carrying things and if still feeling it at night when I go to bed, a bit of a rub with the White ointment seems to distract from the itching though it is still there.

Actually if you check out the website I messaged you with, the Tiger Balm one, you will find that one of them, think the White one is good for tension headaches.

With a rub-on ointment you shouldn't get any side-effects but you can I suppose if you have some slightl reaction to the ingredients. In my case I think it is the cinnamon that is in the Red Tiger Balm now hence I avoid.

I can't say for certain but do you find your aches and pains are less during the waking hours? I tend to be on the go all the day these days. I do find that if I am to sit about for say half hour in the day I start to feel prickly now with PBC. I tend to feel the itch at night and know it is there but due to being awake for around 17hrs by the time evening comes along, I think you have to slump down and then go to bed. I find lying down with pressure on whichever side I get the itching there. I put it down to used bile in the bloodstream and areas of the body that are with pressure on them, the blood probably isn't travelling as it would normally, my theory anyway.

[mayday-Yeah in reply to Hidden]

Thanks again Peridot will try the Tiger balm when I get it. The itch always worst at night think because as u say not moving about as much also not eating so nothing for bile to work on. Tonight for eh I have just taken a 3Rd Questran so bad is it keeps wakening me up. Really is a pain so sick of it now! Anyway moan over.will attempt sleep again.Bfn.

[Julez1961]

Hi mayday-Yeah

I am also end stage PBC and awaiting a transplant, I have been experiencing a lot of back pain some days I can hardly straighten up. I also have rib pain especially in my breastbone area. My legs are also like lead weights I can hardly sit in a chair as I feel they are filling with fluid and hurt too much. I am spending more and more time in bed and I look at the stairs to get to the living room and kitchen and I can't be bothered with the effort and pain it takes to get up them, so unless food is downstairs I don't eat until someone comes home.

I wanted to try Epsom salts to see if that helps, but I keep forgetting to buy it as I'm always anxious to get home.

The professor has prescribed me son Rifaximin tablets, they are an antibiotic which hasn't helped my legs or back, but has helped the Hepatic Encephalopathy that I also have. Good old Panadol seems to help just as well as the other prescribed drugs like Tramadol.

I just put it all down to the fact my liver is getting worse and hopefully I can get my transplant soon. I understand the risks, and the fact that the transplant comes with its own set of problems, but I have no quality of life at the moment as I am constantly in pain or confused.

I actually find I get very itchy when I get hot, so I don't like heat bags.

Good luck I didn't give you any help or hope, but at least you know you are not alone and maybe this is just another symptom that our livers are deteriorating more.

Julez

[Hidden in reply to Julez1961]

Hello Julez1961.

Sorry to read you are having it tough at present with this PBC.

I am a user of Epsom Salts, have been on/off since I was diagnosed with PBC Dec 2010. I know decades ago it was reputed for muscle aches in the bath but it is thought to also have some detoxifying effect too. I have been buying it from Boots in town (I am in Lancashire, UK) in a small drum for around £1.50. It does 2 baths. I do find sometimes it can make the skin feel a tad dry.

I then found a large drum of bathing Epsom Salts (as Boots is sold for relieving constipation) by The Eco Bath Company in London. I bought mine in Holland & Barratt (they do mail order but not sure if they sell this) as we have one in town. I worked out that for the cost it was round about the same as Boots small drum for the Eco's 1kg drum. I bought one that could 'help with eczema, psoriasis and sensitive skin'. It has 2 herbals in it and I have found this to be skin softening plus it smells lovely. I'lll pop the link on here for you to see as the company itself does ship (not sure if worldwide as don't know where you are) so you can explore.

Yes me too finds that cold is better for itching than heat.

I sincerely hope that soon you are called up and you are back on the road to recovery.

theecobath.com/

[mayday-Yeah]

Thanks Julez the pain is now getting me so down.have been prescribed Tramadol and last week a low dose Morphine patch they do take the pain to tolerable levels but put the itch out of control im in a catch 22. Like u dread stairs etc and getting very little sleep between pain and itch. Can't wait to get transplant now and never thought would see the day I would say that. Just got to keep praying! And if it were not 4my wonderful husband and children I too at this stage would just stay in bed.t they keep me focused and keep me going. Hope u get ur call soon too. Where do u live? I am in N.wIreland.

[Julez1961]

Hi

Yes it gets you down I am still trying to run my own business but seem to do more book work in bed than anything else. But even that takes me twice as long due to the Encephalopathy, my brain is like fog. You are lucky your Dr gives you good pain relief, mine hates me taking tramadol I get that off my GP as he thinks it's inhumane to be in such pain.

I also have a wonderful husband and 4 beautiful children with caring and loving partners, they plus my new granddaughter are my reason I get up every day and battle on.

But that is getting harder.

I live in Melbourne Australia, i actually hired an Irish girl 3 years ago to work in my hairdressing salon. She is from Sligo.

Thanks for your kind thoughts, I wish you a new liver soon too.

Julez

[mayday-Yeah in reply to Julez1961]

Thanks Julez think u r in much worse state than me truly hope u r transplanted soon. Sligo is lovely just about 1.5 hrs drive from mine go down to beaches there every summer when get the weather! Keep ur spirits up and yes as u say thank God for our families .God bless them all and us! Xoxo

[Julez1961 in reply to mayday-Yeah]

Thank you mayday-Yeah I am about to have an Epson salt bath as we are going out for dinner tonight and at the moment I can't walk. It helped the other night when I finally remembered to get some so fingers crossed again. We are all walking time bombs so we need to live for today!

Best wishes to you too.

Julez

[cazer]

is it worth speaking to consultant as would imagine they would have a better idea why you are getting so much pain? If not do you have a nurse that deals with transplant stuff...sorry don't know procedure as end stage but not on list yet. I would imagine that if everything is very enlarged you would have a lot of pressure on your rib cage so stands to reason that this would cause pain ....as I say just guessing really. Also do you have ascites?presumably that is also extra pressure/weight. Ithink it would be worth trying to ring consut they may also suggest a different painkillers.i really feel for you as o toss and turn and get very little sleep most nights and its awful and I'm no where near as bad as you.no one really understands how desperate you get for sleep until you ve been in that situation

Good luck with the wait hope you get a transplant and relief soon.do they take into account pain when you are on the list? If so make sure they realise. ...x

[mayday-Yeah in reply to cazer]

Thanks Cazer think lot of pain is down to inflamed gall bladder and osteoporosis and I suspect my spleen may also b enlarged. Now started on low dose Morphine which does seem to b helpin during day at least. Havin scan next Fri so prob know more after that Bfn.xoxo

[cazer in reply to mayday-Yeah]

Glad u finally got some better pain relief. Good luck with scan. Hope you don't mind me asking but what meld score were you on when you went on t.list.last yr o was an 8 but have lpw grade varices. Portal h. Tension. Enlarged spleen need a hysterectomy but can't have due to other stuff. High blood pressure. but now of this seems to count towards trans list?feel I'm stuck in limbo but can't do anything .lm England but you may be different country? Know 8 is low but don't feel they take other stuff into account....think I'm repeating myself! All the best cazer.

[mayday-Yeah in reply to cazer]

Hi again think my first score was 54, and if memory serves me right 49 is min score to be put on list but could b wrong. Check with British liver trust r Pbc foundation they prob know more. Best of luck.

[cazer in reply to mayday-Yeah]

Oh dear could be like this for ages!have check up next week so will c hot things are then.

[cazer]

To jules as well good luck with the wait. I too spend till1/2 lunchtime in bed then I am able to cope with getting going for afternoon. I do get so frustrated as quality of life is cr.. like you both say children and families keep you going. I try to make sure im dressed and downstairs for when yoingest son gets in from school as it worries him if lm not done. I also understand the food thing if theres nothing nearby me I will not bother eating until I get downstairs As the effort of getting food is greater than need to eat! !which sounds mad when I say it but its true! !!shouldn't complain though as when I was first ill I was pregnant with glandular fever and pbc. ....what a cool combination! !!and I was in bed 24/7 awake all night attacking the soles of my feet with a hairbrush. ....oh what relief. i was being sick On and off during day so I am not as bad as that at present so have to be grateful for that but not great as I know what's coming. Itch is mild/med in comparison to that but still a pain in the a...scuse the swears.havent resorted back to hairbrush yet !!!!.must just tell silly tale...

My other son who was 3at the time I was first ill was stood looking in the mirror hairbrush in hand rubbing his tummy. My sister..who was baffled asked what are you doing? Im brushing my tummy like mummy does....needless to say we both had a good laugh. ..hes now 19and I don't think I have given him a hairbrush phobia ...ha ha.oh the joys of pbc!!!!!x

[Julez1961 in reply to cazer]

Ha ha!

That is sad but hilarious!

Try my new friend Epsom salt baths they seem to help my legs and back taking the toxins out of your legs and all the tissues in your body.

I tell the professor that when I look at food it is like having morning sickness as I have an overwhelming desire to vomit I get sweaty and go pale, so I have no idea how you survived that!

Best wishes to you for some good health.

Julez

[cazer in reply to Julez1961]

I was thinner after having the baby than before getting pregnant. ..and he weighed 4lb6oz. Iwas a size10/12at 35 but looked dreadful hair falling out etc.my husband tried to offer me things for tea and by the time hed got it in front of me I couldn't eat it!!!! Or I'd eat a bit too much (still only a very small portion)and chuck the lot back

I think I survived the first few months of my sons life on custard cream biscuits and banana sandwiches. Things as I say did eventually calm a bit but was left unable to work or manage my children for very long and the little ones had to go to a child minder for quite a lot. We also had home helps which im vs grateful for but would have preferred to do it all myself. I am v.proud of them as eldest is in it and takes lectures at uni and does programming. .girl 2nd eldest is physio.3rd is a farmer and 4lb6oz tiddler is about to go to college in sept all despite the fact that they had to put up with mum with pbc.sorrrrrry.....just poored out life story. Not sure about epsom salts as have varicose exzema and dry skin problems thanks to pbc! But might try and see...I can only itch at worse te he ....!!!!!!!

[Julez1961]

Lucky kids are resilient, I have 4 my eldest 32 just had our first granddaughter the next 29 in Media just got married last month. The 3rd 26 is my manager at my hair salon and my saviour, she had to step up at the age of 20 years old when I nearly died to keep the salon going and dealing with all of that. Then my baby is 24yo she has a restaurant with her boyfriend.

All doing well but it is us that feel we have let them down but they don't see it that way.

I itch all the time but have found the elimination of the toxins seem to make it better. Worth a try!

Always happy to share, I'm an open book too ha ha!

Take care out for dinner now my legs need to do their thing. He he!!

Julez

[cazer in reply to Julez1961]

Enjoy. X