Interested to know what alternative therapies people have tried, and how helpful they have found them.

[Val02]

Feeling really fed up with medical profession and decided that if they are not going to help me Id like to try my own thing; after all Im the one who knows how I feel.

[EAJSWW]

It can be very frustrating when rhe docs cant give us a pill or remwdy to cure but this is because none exists. There are people who will always look at alternatives for symptom control and i think the likes of relaxation, reiki, hypnotherapy etc to help withh pain , itching etc can be invaluable but i would urge everyone to be very careful if conaidering herbal remedies. They are are largly untested can be inconsistent in the dose and content but can be extremely potent and potentially harmful. X

[Val02 in reply to EAJSWW]

Thak you EAJSWW for your reply. I was thinking of therapies/ restriction diets really, as Im not keen on any more pills, herbal or not. My liver results are good, its my symptoms that are so bad, therefore my consultant is happy but Im not. Im in alot of pain 24hrs and its that I want to take control of as medication seems inadequate.

Do you have any personal experience with relaxation etc?

[kosy2 in reply to Val02]

Val,

What is your pain like? Have you been checked for other autoimmune diseases?

As for pain relief - in the past I have used self hypnosis. I had gotten a weight loss program that used several hypnosis tapes. I never lost any weight but found the tapes worked great for pain relief.

BIG HUGS

[Val02 in reply to kosy2]

Its really deep and bad aching in all my joints, and muscle spasms. Just had a full autoimmune screen didnt show anything up. I said to my GP, just as an idea, that perhaps as autoimmune diseases tend to be closely related, its possible to have symptoms of a disease without another antibody.....quite surprisingly she agreed.

The only recent developement I have had was my MRI scan showed abnormalities consistent with MS, (thats not a diagnosis), and I was thinking of following a MS exercise plan for the muscle spasms on the grounds it cant do any harm.

[kosy2 in reply to Val02]

Please help educate me. I thought a MRI would dx MS. If not than how ? I am courious cause I'm thinking that I am having symptoms of MS. Not sure the steps toward diagnosis. I am a bit uneasy about bringing it up with GP for fear of getting "that look" - the one doctors give when they have never heard of the symptoms you are having and they think you are a hypercondriac.

Also, can you tell me more about a full autoimmune screen?

Any information is much apprecated.

[Val02 in reply to kosy2]

MRI does diagnose MS but they dont like to diagnose on one indicator, it has to be two. I had the changes in the white matter.

Doctors most unkeen to go down MS route without an "episode". I think you need to go with you neurological symptoms (which incidently I have plenty), to your doctor. I have had mine for a couple of years. It was only when I was getting bad headaches daily she finally bit the bullet and sent me to see a neurologist. Do you have the 24/7 pins and needles and all that?

Neurologist is not treating me for MS as such; but after the scan took my symptoms a bit more seriously, and put me on Trazodone to help me sleep, RLS and deal with the muscle spasms and pain. Only been on them 5 nights defo good for sleep and RLS no real impact on pain as yet although muscles are a bit more relaxed.

I got this strange change of vision thing going on, I struggled to look at reds and green, they were jumping out at me and changing hues as I looked at them and I ended up wearing my sunglasses all day and having to look away. It was the strangest thing.

Now the autoimmune test I had a few weeks back cos I got a large lump on my neck and they thought it was a lymp node.

I had about 10 blood tests done and then as an afterthought she said lets get your autoimmune profile done, havent heard anymore so guess it just showed the PBC. It was just a simple blood test but it takes a while to get the results.

Hope that helps.

[kosy2 in reply to Val02]

Thanks for the info, it really does help. Yes I do have pins & needles in my feet as well as blurred vision, stabbing pain in my head and what is called "ms hug", leg jerks .......

I am definitely going to request an autoimmune profile because I also have symptoms of sjogren's syndrome.

Not sure why I feel the need to know so much - not like there is a whole lot of treatment options for autoimmune diseases and from the research I done treatment for one disease is counterindicated for another. But still I have to know.

Thanks again and All the Best

[littlemo in reply to Val02]

Hi Val02 when I was pregnant with my little boy I went into liver failure briefly and was experiencing a lot of back and hip pain and ended up spending the last about 8weeks in a wheelchair so bad was pain when mobilising. I did not want to take the pain killers because of the pregnancy and because didn't want to put more pressure on my liver. So whilst in hospital the physio applied heat pads to my painful areas which really helped. I bought myself a little microwavable heat/cold pack in Boots chemist. Sometimes I heated in in micro and applied it to sore areas or sometimes put it in freezer and used it as a cold pack and this worked really well too. Hope you get relief soon pain terrible to live with too.

[Hidden]

The only alternative therapies I have attempted since diagnose Dec 2010 are my own!

With that I mean altho' I was informed by the hospital consultant 'the liver loves calories' and he mentioned NO restrictions in diet (no mention of alcohol unless he knew I was sensible when he asked about drinking and I just said occasional social and family functions), I decided after starting on the urso I actually loathe to take (always been of an anti-drug opinion), I'd do a bit of dietary experimenting myself and try to take note.

Apart from odd times when I feel like I'm flagging due to a bit of fatigue that is of no problem to me at present, it is the itch that I cannot get my head around at all.

I seem to think that since taking urso the days when I don't itch (managed 10 not so long ago!) could be due to unknowingly getting a good balance between what has been consumed during the day.

I'm also a believer in that perhaps something acidic (I've been having grapefruit juiced, not every day, some I have orange, lime or lemon) can counteract the acidic effect bile has on the system. I have read that grapefruit blocks cholesterol so was a bit dubious but then I read in one of the PBC mags online (think it was our American Foundation's) that there was or it has now been completed, research for itching using grapefruit.

I know one good thing I do know is that I find when I'm active I 'forget' all about PBC and itching and often find that if possible if I'm not too relaxed of an evening watching tv (used to watch a film at 9p.m., miss that these days) if that is possible on an itchy day, I can go to bed and don't feel the usual restlessness or itch as I then fall asleep.

At present I don't experience pain for a long period of time (I don't at all really) like some contributors to this site so I've no contribution with regards to that area there.

[Hidden in reply to Hidden]

I understand your frustration. You have said that you are in pain but haven't said where the pain is, or when it is worse. When I wake up I have pain in hands feet and elbows. The pain is as bad as it is going to be for the next 24 hours. I am using a "colour therapy". I imagine the pain is a raspberry red, than keep clenching and relaxing the hands and feet and imagine that I am introducing the colour yellow. When I can visualise orange, I get up. Then I try to walk around and shake my hands whilst waiting for the kettle to boil. The worst, by then, is over. Recently I learned that I have vitamin D deficiency and osteopenia. To counteract that I take tablets but also try to walk a mile at the end of my journey to work. The effect is amazing as I find I have less pain all day (mine is a VERY physical job). The worst part of all the above is thinking about moving. Every day starts with a mental "battle".

Well before my diagnosis I would consult with a Physiotherapist who uses acupuncture for pain relief (I also have asthma). I have found that it is extremely good for pain relief. The effect lasts for 2 weeks and then the effect wears off gradually. The cost is £45 for an hour, so prescriptions are cheaper, but no-where near as pleasant!!

There was a helpful posting on this website about auto-immune diseases in general which alerted me to the potential of lactic acid build up which can be painful. It is very supportive of other PBC sufferers to share their good "finds" and experiences. If you need to hear a voice at the end of the phone I can thoroughly recommend giving the foundation a call. They have helped me get back on track several times.

Good luck in your search!

[littlemo in reply to Hidden]

Gosh I was told by a friend who had pbc to avoid eating grapefruit as her consultant told her the liver cannot beak them down because of the acid. Now wonder did she pick him up wrong! Can anyone else throw light on this re grapefruits?

[Hidden in reply to littlemo]

Hello littlemo.

Well I've not been advised against eating anything since diagnose of PBC as previously mentioned on here.

I do know that there are medications (statins for eg) where you should avoid grapefruit due to interaction (something to do with the enzyme in the fruit).

I have had a look online and from the national newspaper here The Mail, there was an article on 24th Feb 2012 regarding this fruit that I have only just seen. Here is a very small part of it as grapefruit funnily enough appears to have other properties:-

'Eating oranges and grapefruit could cut your risk of stroke, claim researchers.

Both the whole fruit and breakfast juices appear to protect against having a ‘brain attack’, probably due to their high content of a certain type of antioxidant.

A new study looked at citrus fruit for the first time, rather than a range of fruit and vegetables which have been linked to stroke protection.

Eating oranges and grapefruit could cut your risk of stroke claim researchers'

Read more: dailymail.co.uk/health/arti...

Quite frankly unless I'm informed otherwise I shall continue to enjoy. I do not consume them every day, but when I do buy them, pink, red or white ones, I put them thru a citrus juicer.

[littlemo in reply to Hidden]

Thanks for that Peridot sadly don't get lot of time these days to do research on all I hear, what with trying to hold done job, running after my 5yr old, taxiing my 16yr old! And wont even start on himself ( i.e. my other half! ) and the darn fatigue which seems to be getting bit worse recently. However I do know for fact any fruit and veg that are orange in colour have great antioxidant properties discovered that when doing a uni assignment few years back. In general we can't go wrong with the governments advice on taking 5 fruit and veg every day as part of a balanced diet to keep us healthy no matter what illness we have or indeed to help prevent ill health.

[Val02]

My pain is fairly general. In the morning I cant stand on my feet they are so painful, crawl downstairs for breakfast. After an hour or so, I start to walk (ish), and go on my exercise bike for 30 mins. By this time my legs have got going. All the joints in my body ache, feet, ankles, knees, hips, fingers, wrists, elbows, shoulders, neck, and sometimes my ribs join in. Also plagued with headaches. I try to stay off the painkillers in the morning but by about midday its unbearable, cant concentrate on anything and cant settle, diversion tactics failing to work. At the moment its my shoulder that is hurting so much, when I try to carry on I just feel sick. I then take codiene to try and get through the pm, sometimes it helps and sometimes it doesnt; but as its not very effective I would really like to find another way, and that would be one less drug going done my throat. I have had physio and acupuncture for my neck which certainly helped, if money was no objection I could carry on with that but just too expensive privately.

I was thinking of asking rheumy to refer me to pain clinic and see if I could get physio on NHS. I have been recently told I have osteoporosis in my spine but rather surprisingly my back is fine.

Gonna research colour therapy now........

[littlemo in reply to Val02]

God help you pet your daily life must be miserable with all that pain. Try relaxation techniques and cd's of relaxing music. When people experience pain they automatically tense up their muscles and this then adds to the pain, concentrating on relaxing the muscles through techniques such as deep breathing etc can help lessen and sometimes even alleviate pain. Pain clinics are very good as they do have all the knowledge re appropriate pain relief for various types of pain you problem could be that you are not being prescribed approprate pain killers for your type of pain.It would be a good idea to get your dr to refer you to one asap. Truly hope you get your pain controlled soon and can have a happier life. x