Lets all make a list to get real recognition!

It seems to me that we are all/mostl of usare at the hands of doctors that rebuke our symtoms or know very little about PBC. Reading and researching shows me that there are very few factual list of sytoms that are written by actual suffers. I have tried to find something to give to my family to read and get a true picture, but most seem written to flower over thing so we the suffers dont feel too bad..Any way, here is my list,PLEASE add to it and when its complete I'll send it to the foundation to ask if they will perhaps print it for the dr's and families of suffers to get a true picture..

Chronic fatigue

Intense itch

Severe joint pains

Upper stomach pain

Nausea

Depression living with all the above

Bowel problems

32 Replies

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  • While i think this is a good idea Lisacj I dont think that anyone with any other illness could contribute.

    For instance i dont know how much of my pain is down to fibromalgia and how much PBC. My swollen hands/arms/feet could be down to PBC or another auto immune disease. My poor memory/concentration could be down to PBC/Gluten related/Fibrofog.

    So while i could make a huge list, with most of my ailments I really dont know what exactly causes what. A great idea though if you just suffer with PBC alone.

  • I have been diagnosed with PBC, Osteoarthritis in the hands and feet and Osteoporosis in the spine.

    While I agree to a certain extent with zipitydoo that some of these symptoms could be to do with other illnesses i.e. my joint/bone pain and the Osteoarthritis/Osteoporosis,...But as for my other symptoms I can only put them down to having PBC as I have certainly not been told otherwise and no tests have been taken to check for any other conditions.

    My symptoms are like yours Lisacj with some additions

    Poor memory/concentration

    Muscle and bone pain

    Dry mouth

  • I have this problem, i have multiple autoimmune problems, and dont know what's causing what. I also have secondary Sjogrens, but to what nobody can tell me!

  • Hi inkedup,

    Your Sjogren's is secondary to the Scleroderma!! The Raynaud's we have with Sclero is secondary too. I wouldn't be surprised to be told that the PBC is also secondary. These other things are secondary to Sclero. If we didn't have Scleroderma we probably wouldn't have them. Raynaud's and Sjogren's can be primary and then it seems they are a bit different.

  • I am all for this and wanted to do something similar a while back but I got shouted down by a poster on this board and I hope you don't, so here goes.

    I have PBC and osteoporosis.

    I suffer from

    Chronic fatigue.

    Severe joint and muscle pain all the time.

    Intense itching.

    Hair loss.

    Nausea,

    Depression.

    Some bowel problems at times.

    The worst bit for me in the joint and muscle pain as it is so tiering dragging myself around.

    I also get confused at times and forget what I have done or where I have just put things I also tend to talk rubbish as well, like words get jumbled up but I put this down to the tiredness.

    The osteoporosis unit said osteo does not cause joint / muscle pain, I done have arthritis or rhumy..........so My gripe is what the heck is causing all this pain then, no one seems to care to find out.

  • lindaclarke and mumofthree, I think there enough positive posts to pursue, thanks for you input. As PBC is an autoimmune disease it seems logical that other diseases will come about too. I am seeing an immunologist in 2 weeks so will hopefully get soem answers on the whole lot?? I do understand where the others are coming form and will see if we can differentiate soem of these problems, Thanks all,x

  • Lisacj I forgot to add that my skin all over is very dry all over and also marks very easily with like blood spots coming to the surface if I scratch my arms, Whatever i rub into it i don't seem to be able to moisturise it and it's worse when i have a shower even one without soap etc.

  • lindaclark - have you had your thyroid checked? I have hypothyroidism, and now that i,m on the correct dose, this dryness/itching has got a lot better

  • Hi, yes i have had it checked twice now.

    Linda

  • Same here, I have hypothyroidism since 2003 and in 1998 diagnosed having a PBC. Now, experiencing chronic fatigue, itching at the back like a prickly heat, muscle pain and nausea. I can only eat wheat bread, I have a hard time now to eat rice, it seems I suffer indigestion.

  • Hi everyone, Hope you are all as well as you can be.

    I myself put a list blog last year about what I personally suffer, it seems that in general all PBC sufferers have most of these symptoms, but back to the list,

    Fatigue

    Joint pain (to having a cup hands being so sore I am unable to hold a cup myself)

    itching

    Poor concentration

    Bad memory

    Reynauds

    Stress

    depression

    red palms

    mixed up words

    bad night sweats

    bruising with no reason

    pain in my side (now take morphine for pain)

    nausia

    weight loss

    and finally I now have to use,

    Stair lift

    bath hoist

    travel by wheelchair( but the time you can spend shopping girls is amazing),haha

    I have went from being a chef working 14/16 hrs a day six days a week to having to rely on someone to do almost everything for me.

    how many times a day do we all ask "why me", but there is always some one worse than yourself isn't there?

  • Poor You! It's really a long list, but I'd like to congratulate having such a good attitude as: 'but there is always some one worse than yourself isn't there?', yes, we have great problems, but when we look around...

    Don't loose Youre optimism, keep well!

  • Great idea. I suffer from chronic fatiguge, joint and muscle pain particularly areas in which I have had damage in the past, right abdominal pain, get depressed and emotional very easily and suffer from hot flushes throughout the day and night.

    Thank you for doing this. x

  • I have 7 diagnosed autoimmune diseases. I as well as the doctors can't figure what is causing what. I have experienced all of the above symptoms...every day is a new surprise.

  • Don't forget cognitive deficiencies such as poor concentration & memory. I have no idea why even the PBC Organisation doesn't list this MASSIVE effect of PBC. It is recognised by the medics I've spoken to, and is separate to hepatic encephalopathy.

  • Forgot to say i have bad sweats at night, I wake up with a ringing wet head, wet sheets etc, and it isn't hot flushes as I am on HRT at the moment and the amount of it is too much for a flush anyway. And my ear holes itch right down inside ( just remembered this as it's been happening all afternoon.

    Gosh we sould like a load of old crocks.

    I also have a wheelchair derann and a scooter to nip to the shops on my own as I can't drive anymore. our social services will not put a stair lift or a shower cubical in for me as they said ( this isn't the house for you ) and said if I sleep in what is my dining room ( move down stairs ) they will consider it, they are oh so helpfull in North Wales.

  • Chronic fatigue

    Intense itch

    Severe joint pains

    Upper stomach pain

    Right upper abdominal pain

    Nausea

    Depression living with all the above

    Bowel problems

    Day & night sweats

    Bruising

    Stress

    Dry skin

    Marked patchy skin

    Poor memory/concentration

    Muscle and bone pain

    Dry mouth

    Dry gritty eyes

    Getting there team:) . I know some of these may be other disease but I know that some of those other diseases are from having PBC like Sjogren's and osteoporosis.

    Lets keep going, thanks so much all of you for your time xx

  • Hi!

    Can't recall seeing these on the list:

    POOR SLEEP I often wake at 1am and am still awake at 6!

    CRAMPS-sudden and severe muscle seizures in my calves and abdomen and cramp in my hands and feet!

    Keep listing!

  • Dry Gritty eyes.

    Sore burning feet.

    Dizziness.

  • As I was reading through all of these lists I realized that more of my problems than I knew can be chalked up to PBC - tho' not all, darn it. lol Some is just old age (I'm 71), some is just pure orneryness. hehe.

    To confirm some of the others, however, this is my list - that I can remember. -:)

    Memory

    Fatigue

    Waking in the middle of the night for several hours

    Lower abdominal pain

    Stomach pain

    Bowel problems (thank you Lord for Depends) - (anyone ever duck-walk to

    a public restroom?!! LOL)

    Raynauds/hands

    Mood swings (?) - - Does anyone ever "flash in the pan" anger that is totally out of character?

    Lightheadedness - could be caused by the COPD

    Balance problems at times

    Loss of muscle/strength

    Loss of appetite tho' not losing weight

    That's all that I can remember for now

    Ya'll have a blessed day/evening.

    Tumbleweed

  • I get cramps in my calves and feet, just under my right bust and in my abdomen as well but just put it down to having wind or being cold, I didn't think about it being related.

    I also get like white clouds in my right eye so I can't see through it, does anyone get that, I am going to the opticians soon BTW.

  • Hi everyone, I have a lot of problems, but I don't blame PBC for all of them:

    osteoporosis

    arthritis

    degenerative disk disease of the neck and back

    Fibromyalgia

    GERD

    Meniere's Disease and am dizzy everyday

    tendonitis in the arms

    joint pain

    sometimes pain in the liver or spleen

    sometimes itching

    can't sleep without zolpidem

    sometimes lower abdomen pain

  • Hi, here goes

    Extreme fatigue

    Muscular and joint pains (getting more severe)

    Poor concentration

    Poor memory

    Forgetting words to simple every day objects

    Itch ( not so bad as most)

    Stress

    Dry eyes

    Dry mouth

    All over dry skin

    Thinning of hair

    Muscular wasteage

    Balance

    Diziness

    Unexplained rash

    Bowel problems

    Pain on upper right quadrant

    Weight gain

    Gosh didnt realise how bad this was until I made this list.

  • Wow, its amazing when you list them you realise how many you have. I have PBC for definite but still being checked to rule out anything else, fingers crossed.

    Fatigue

    Foot pain - like treading on needles around edge of feet area and pains in the joints of toes?

    Poor concentration

    Poor memory

    Forgetting words to simple every day objects, or simple words in mid conversation

    Itch ( not so bad as most)

    Stress

    Dry eyes

    Dry mouth

    Dry skin

    Balance

    Pain on upper right quadrant, not too bad

    Weight gain

    Night sweats, just started

    Reynauds

    red palms

    Vitiligo

    Rosacea - had great skin for years now i have spots constantly on forehead

  • This is weird I have Raynaud's, seems a lot of us do!!!!

  • Don't forget the knock-on effects of a badly functioning liver - like high cholesterol and osteopenia (the early stages of osteoporosis). Also other autoimmune conditions - like lichen planus (in the mouth, which has to be kept on eye on in case it turns cancerous). I have all these so you can add them to all the lists above!

  • Hi all,

    I've not been on for a while as not been too well :(

    Back at work today (need the money !!!) & thought I'd add my twopennyworth to the lists

    Chronic fatigue

    Severe joint and muscle pain all the time (which is getting worse)

    Poor concentration

    Bad memory

    Bruising for no apparent reason

    Itching (always worse at night & when I’m tired)

    Nausea,

    Depression

    Bouts of Insomnia

    Bowel problems (although Fibogel is helping)

    Stress

    Dry mouth

    Dry gritty eyes

    Dry skin

    Occasional Dizziness

    Weight gain

    Take care all - I'm glad to be back

    Sue :) xxxx

  • Hi all, I'm new here.

    I was diagnosed on the 29th April this year after a liver biopsy. I have all the symptoms described above.

    I don't see any doctor until August this year, the only meds I have been given are cetrizine for the itching.

    I'm worried and confused :(

  • Dear jannybean,please dont be too worried, we have all felt what you feel and totally understand. It is a very big blow, when first diagnosed. In time it starts to be a little clearer and then you relalise life does and will go on.xx Read a lot of the blogs on this site, some are a little scary when you hear how some of us are suffering with this and that, but many others are actually doing really well.If you need, ask your GP if they can push the appoinment forward?? may help?? Any way use this site to ask loads of questions , some one will always offer help.. Take carexx :) Doubled up posting this so to make sure you get it

  • Dear jannybean,please dont be too worried, we have all felt what you feel and totally understand. It is a very big blow, when first diagnosed. In time it starts to be a little clearer and then you relalise life does and will go on.xx Read a lot of the blogs on this site, some are a little scary when you hear how some of us are suffering with this and that, but many others are actually doing really well.If you need, ask your GP if they can push the appoinment forward?? may help?? Any way use this site to ask loads of questions , some one will always offer help.. Take carexx :)

  • Thank you Lisacj for your kind words and advice. I am at hospital tomorrow with my hands, I have carpal tunnel syndrome in my right and my left had carpal tunnel but now the other fingers are numb due to a trapped ulna nerve. I had surgery on my left for the carpal tunnel and thats ok now, I just need the ulna nerve problem sorted out.

    I had a bone density scan last week and I'm waiting for results on that. I am going to make an appointment with my GP and ask if there's a way to get to see the specialist sooner. My previous consultant at hospital was Dr K Padmakumar and he has referred me to Dr K Moriarty, not sure why though. xxx

  • I add to the 'popular list' very bad (worsening) headaches and heart problems.

    I'd ask if You also, because it's not well known that some heart-problems can be connected.

    Chronic fatigue

    very poor concentration

    forgetfullness

    Intense itch

    Severe joint pains

    Upper stomach pain

    Right upper abdominal pain

    Nausea

    Depression living with all the above

    Bowel problems

    Night sweats

    Bruising

    Stress

    Dry skin

    Marked patchy skin

    bone and joint pain

    Dry mouth, eyes

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