I thought it would be interesting to see a list of symptoms people have had (sometimes for years) and had no idea what the cause. Then after reading a post you realize that "OMG I am not crazy, this is connected to PBC.
I'll get us started:
brown spots(over 30 years, now think they are Morphea an autoimune disease)
ear itch
poor sleeping at night
excessive tireness (family always blamed obesity)
marshmellow brain
feeling like bugs crawling on skin
peridonital disease
extreem anxiety
low tolerance to stress
Thanks to all who reply
Written by
kosy2
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My goodness!!! How can one disease have so many "symptoms"!
I have all those you mentioned other than the peridontal disease and the extreme anxiety. The brown spots I chalked up to age/liver spots. The red palm comes and goes; at least for me. I also have Reynaud's in my hands.
The marshmallow brain is a real problem. Not remembering "little stuff" is bout to give me fits. It just really started with a vengence within the last couple of weeks. -
The "bugs crawling" gets to me sometimes. We live in "tick country" and it seems I'm constantly checking myself but nothing's ever there.
So, I would say, for me, the memory and the "bugs" are about 2 and 3 on the list. Feeling tired so much of the time and having to really push myself in order to get even the most simple housework tasks done is number 1 for me.
For me its hard to say cause I'm also menopausal. Double Yikes!! I started having stomach pain in early 2010. Sept. 2010 I had exploratory surgery. Adhesions found and suspected adenomyosis. At that time I had slightly elevated LFTs. Felt gteat afterwards! Hurt my neck in 2011 found out its wear and tear, herniated discs and arthritis. Started taking Hydrocodones for pain in August 2011 by end of Oct my liver felt swelled up and my right side hurt. Just got my PBC diagnosis at end of March 2012. I dont itch (thank god) but my hands and wrists hurt like crazy. Other joints can hurt too. Increased alllergy issues. Glad I joined this group. And what a good Thread u posted! Curious to read everyones symptoms!
I have almost everything on this list, plus I now get upset more easily than I did before, like I once suggestet doing a list like this once and got shouted down by a member saying there was no need for me to do one as the foundation has all the infomation needed for GP's so i am sure pleased you have done it as I just gave up. In my experience all GP's don't contact the foundation and the info isn't sent out to all of them ( well mine hasn't got any and just more or less called them a support group when I showed him stuff from them) he said it was good you have this support and i just thought to myself "well you don't give me any" So great stuff and lets keep adding to the list
I am so sorry that you got shouted down by another member. I thought this was our safe place.
Who else better to make a list of symptoms then the very people that have them? I truly believe that we know more than most GP's about PBC.
I find it very comforting to know that my ear itch is due to PBC. I would have never gone to GP for that. And because it was mentioned in a post I now have an answer and will always be grateful. So please never be afraid to ask a question here. You never know how many people you might help. If someone does not like it then they should not reply.
I can relate to what being easily upset. Like if I get more than 2 bills in the mail I fall to pieces. Years ago we would get 4 or 5 each day (and most of the time did not have the money to pay them all) and I was ok. Now, we have the money and I just can't handle if they all come on the same day.
Was your ear itch inside Kosy as I get it inside my ear and have been known ( yes I know I shouldn't ) pulled some hairs out with tweezers and have even got a piece of dry skin out, how was yours delt with?
I don't like paying money out either now, I have the urge to hang on to it these days :o)
Yes it is inside just my right ear. It can last for hours and it comes and goes. Drives me nuts sometime that I have to get a cotton swab to try to scratch the itch but can never seem to be able to reach it.
The bill thing is more like I am overwhelmed by having to write more than one check at a time than hanging on to the money. I think back to when all the kids (I have 5) were little and I had no problem doing 4 or 5 thing at a time and now dread getting the mail.
This is a great idea but please be careful. Don't want to be a kill joy but please don't put all your symptoms down to PBC. Some of them might be from other conditions, like the reynauds that Tumbleweed41 mentioned.
Mention them all to your doctor as further investigations are sometimes necessary but I do agree that the ones that the doctors don't know what causes them, if a lot of people with PBC suffer from them it does seem a bit coincidental! Take care everyone. x
Yes this is what I though Jt that if a lot of us have the same thing that questions could be asked when we see GP's or consultants, but I do get what you mean and it could make some of us hypochondriacs if we are that way inclined
Very good points. THe only reason I was diagnosed with PBC is because my lupus doctor was concerned that I had slightly elevated liver enzymes for over a year (blood tests about 2-3 times a years.) My only symptoms were fatigue and joint pain, but those are symptoms of lupus (plus every other symptom listed above except perhaps the itching, which I have a little and is probably dry skin). My Gp was shockd that they went ahead and did biopsy on me since my liver enzymes numbers would have to double to be at the low end of stage 1 PBC. I am sorry that all of you had to suffer before your diagnoses.
I totally agree with what you say it is so easy to blame everything on PBC as I did at least over the last year. In Feb this yr I had an extremely frightening experience which made me see GP resulting in having an ECG done. A few days later I had a call from a consultant in my local hospital to be admitted in 3hrs approx. my heartbeat was between 30-40 beats per minute. I had a pacemaker inserted and instantly noticed an improvement. Many of the symptoms I was having were the same as PBC but but the degree had increased. It's not easy deciding when to see GP when you have so many different symptoms. X
Helmary - I am responding to what you said about having a pacemaker. For over 40 years I have had episodes of a racing heart and a long time ago an elderly Dr. told me that it was Angina. (It wasn't). Last May(?) I had a new type of "study" done and they did 10 "carterizations" (ablations) around my heart. Then last Fall I started having problems again and my Cardiologist implanted a monitor which pinpointed some more trouble. In Jan. back to do another study and they did 32!!! carterizations!. They said if I have any more trouble - it will mean getting a pacemaker. So I guess that a pacemaker is for either problem - slow or fast (?). Does the pacemaker restrict your activities in any way?? You said you noticed an improvement and that is always a good thing. - Wish our AutoImmune problems would go away so easily. -
Also, like you, it is sometimes hard for me to know when a "symptom" is bad enough to go to the Dr. and then we have to decide which "ologist" to go to - everything is getting so "specialized".. I'm of the age that when we needed any medical advice, or symptoms taken care of we just went to THE Dr. Didn't have all these "ologists" for each and every problem. -:
Thank you for your response I can't say whether a pacemaker will improve your condition, but as far as I'm concerned it seems silly to say I feel awake now and there has been an improvement in my memory. Sure this is down to improved blood circulation. In saying that, yesterday was a bad day total lethargy, extremely cold and very painful joints and muscles. I now know to just go with the symptoms and rest hoping that it passes fairly quickly. Good luck and take care.x
Its very difficult when you have one auto immune disease you are more lightly to have more. A lot of the symptoms overlap so its difficult to say which is related to what or even if its related to the meds we take. its still nice to know that we are not alone in these strange symptoms. One I get that I dont think has been mentioned is itching in the roof of my mouth and the tremmor sensation when waking.
And if anyone finds my brain I would like it back, my fingers might hit the right keys then.
The tremmor sensation when waking thing - is it like your whole body is vibrating on the inside, just as you wake up, it lasts a minute or less. Sometimes I can feel it when I am sitting still but always feel it as I wake up and when I lay dow to sleep at night.
This perticular symption is the very reason I asked this question. Thank you, Thank you, Thank you - I am Not crazy.
My brain is AWAL as well, maybe they are hanging out with all the missing socks.
iching ears, fuzzy brain, forgetfulness, fatigue, interupted sleep, joint aches & pains (although i am being tested for arthritis at the moment), peridontal problems, and now am being sent to othalmologist for the second time as eye pressures have gone up again (one sign of glaucoma) there is no history in the family of this, who knows if it has anything to do with PBC.
Tremors sensation when waking, me too! Thought I was just weird (OK I am weird). What is up with that?
Think it has gone on holiday with mine as I keep typing words back wards, don't know how........but people have earned a lot of money doing things like that in the past.
I don't get an itching in the roof of my mouth but do get the tremmor when out walking, I just put mine down to loss of muscle with all the wieght iv'e lost.
Well, my tremor on waking can't be due to weight loss because I am fat. I thought it was due to some other neurological problems I have had, and I have tremors in other parts like arms and legs, and neck and sometimes torso, actually my whole body I guess, also something called myclonus, a fancy word for jerking muscles. I think maybe since the liver (and kidneys) filter toxins maybe they just build up while we sleep and the tremors are a side effect? One theory anyway.
Have some of symptoms i.e. joint pain, crawling bugs, tiredness, inability to cope with stress and also pain on right side under the ribs. Brain still seems to be functioning ok Julie x
Not sure they are all to do with PBC, but it's surprising how many of our symptoms are the same as others with PBC. For instance, I never considered the itching in my ears, which has driven me mad over the past few years, to have anything to do with PBC, but the doctor has no idea what it is, and no amount of drops has made a difference.
But I'm still here, and still enjoying life, and things could always be worse! xxx
Well, I didnt see ( hair loss) on here but could have missed it. I started that about the same time but couldn't figure which came first..I was diagnosed with Alopecia areata or maybe totalis too...anyone else have unexplained hair loss in conjuction to your PBC?
I first notice hair loss just befor I was dx with hyopthyroidism 20 years ago. Have been on synthroid ever since. Then about 5 years notice more hair loss. Thyroid levels were ok at the time so it was a mystery. The hair loss now seems to be in cycles of thinning then periods of regrowth. Hope this helps.
I had a bit of hair loss after the Dr. put me on Prednisone at the beginning of this mess. -:). (4 1/2 yr ago). My husband actually suggested that I cut it quite short (We Americans call it a "Pixie") and I kept it that way for a couple of years. I am now letting it grow again and it seems a bit thicker.
I have alopecia areata aswell. Mine was so bad I had it all shaved off and still keep doing it as the sides are just like bum fluff now.
Fatigue
Joint pain
Poor concentration
Bad memory
Reynauds
Stress
depression
red palms
These are my worse symtoms. Does anyone suffer with tinnitus? I have that quite bad, also my concentration is terrible. I never concentrate on the job or task I'm doing but other things to do after that. It drives me crazy lol.
I have had this for quite a few months now with a very high pitched whistle in my ears.
Another thing that a friend said might be connected to the tinnitus is the fact I dont feel safe when driving round a bend in the car. I have to lean over onto the side like when riding a motorbike. Its awful.
Reading over what has been addressed here ( so far) I think it's clear that we are all sharing similiar symptoms. Those that I had at the first onset of this disease were 'brushed off' by my primary doctor and I was treated symptomatically with medication. I hope we will be able to help each other by support and understanding> I have learned so much already and appreciate all the imput on here !
Not sure if you are still active on this site, but I saw this and wanted to tell you yes, I have tinnitus pretty loudly in both ears. I'm going to get an audiology work to find out why, as my hearing seems to be less as well.
Again thanks to all who have replied. I think we have a good thing going on here.
Take for instance the itching inside the ear. I have had it for some time and never made the connection to PBC. The information that others have and the doctors don't know what it is and that they have not found a treatment that works is extreemly helpful to me. It saves me time and money going from doctor to doctor in hopes of an answer. An answere I am unlikely to find because the chances that an ear doctor would know about PBC is slim to none.
I agree that we don't want to just assume all our symptoms are PBC, however they could be or another autoimune disorder. If we can discuss it here with each other, then do our own research on the internet, then we can bring our most important questions the doctor.
Please don't let this thread die out. Come back when you remember a strange symptom. The stranger the better you just never know who you might help.
Unfortunately the medical profession seems to love to split the body up into specialisms, such as liver (Hepatology), digestive system (Gastroenterology), joints (Rheumatology), and so on, forgetting that most diseases affect more that one area, and people with PBC are not just a liver but a whole person! This means specialists may miss symptoms from other areas.
Not sure if this is like the bugs thing or the beginning of itching for me (i'm lucky not to have that symptom yet) - I occasionally get a tingling sensation across my skin - you'll laugh at this description - it's like spiders running over me with freezing cold feet!
Also went through a stage of numbness underneath the skin, down my right side. Again how to describe this is difficult. Not sure whether that is my liver. Finally does anyone get tingling legs? I always know that I am going to have a really bad day for fatigue when this appears?
Kosy2 - this was a great post. It's made me write down my 'strange symptoms' ready for my next consult. x
Just read all of this post and I think that my tingling is the same as the tremor when waking up. It does feel as if my insides are vibrating - particularly my feet. Yay! I too am not going completely mad - mind you did leave my leather coat with mobile in pocket in the supermarket today. Husb was not pleased but we got them back luckily. Damn you PBC - lol! x
* Does anyone get a cold feeling that feels like it is coming from the depths of your bones? The only way to describe it is it feels like cold water between your skin and bones? I get the sensation in my arms and legs. I have mentioned this to my GP and Specialist and both just looked at me with blank expressions!
* Have also noticed recently that my hands, fingers and wrists feel a bit weaker. Feesl like they are swollen but they are not! Have also had severe pain at the base of my middle finger and itching on my left palm. (didn't win the lottery as the old wives tale says that an itchy left palm means money coming your way, lol!) Anyone else had this feeling?
Sometimes I feel that things are difficult to describe but I know that I feel them but also somethimes feel that I am imagining them. Nice to know if others are experiencing the same things so that I know that I am not going mad. Many thanks. x
After standing or walking for a couple of minutes I get numbness in my legs from the knee up.
Then when I sit down its like someone turning a cold water tap on in my knees and the cold water gushes up the Inside of my legs.
I get very strange looks when this is mentioned to the dr.
My wrists have changed shape over the past year and have become swollen and my right arm feels lumpy underneath. Its also swollen between my knuckles and have developed warts on my fingers.
Hi all of your stories read like my own, and though I am only just diagnosed, I am now thinking I must have had this for some time. The itchy ears I have had for a long time, gp thought it was allergies because I have several due to asthma .I have
fatigue
brain fog
ahcy joints, my wrists have been painful for around 2 years
restless legs and the occasional flu type flare with burning pains in all my joints
lack of appetite
gas and bloating
Initially had itch in hospital, but that is ok now (Hysterectomey 16 years ago)
lack of concentration
muscle waste and weakness
I get the shakes and my heart beats fast
cold hands and feet
These are what I have discovered over the past few weeks as I have been monitoring self. Also these symptoms arerelated to my hashimotos and AIH.
I am so glad I found this site, and I know I am not alone in all this weirness lol.
This was a terrific idea. -:). It has certainly pulled a lot together. I hope that the member that "shouted down" the first idea is reading all of this and seeing what a good thing it is. The Foundation, I'm sure, puts out the information that they have, but nothing is ever better than getting it "from the horse's mouth" so to speak.
I have to keep going back to the top and re-reading the old posts and catching up on the new ones that are "added in". It's great -:).
I sooo want to thank the one who first posted about the itching ears. Had no idea that would be part of all this. Mine seem to be worse at night for some reason (?). It itches inside the ear and nearly into my throat, if that makes sense.
Also have the "pins and needles" in my legs from knees down, mostly after I've gone to bed but occassionaly at other times also.
In a way, I'm glad that all my "symptoms" are not just "old age". lol I'm sure that some are but it makes me feel better knowing that others have these problems also and that it's not just in my imagination - as my poor husband was beginning to believe.
My symptoms: fatigue, itching, gritty feeling in the eyes, trouble focusing sometimes, itch inside of my ears (drives me crazy), Cholesterol deposits are very noticeable on my face and especially aroung my eyes. Foggy brain, no energy, joint pain, red palms, red soles of my feet, tremors of my hands, hands and wrists feel swollen, decrease strength in my upper arms. Can't open things like I use too, Numbness from my right breast area, down the underside of my right arm and my right shoulder blade area. Pain comes and goes to my right arm. Sometimes my right arm feels like I am lifting 500 lbs of something, it feels so heavy and tired. Insomnia, only sleep 3 or 4 hours at a time when I do sleep, restless legs, hot then cold, twitching of all muscles, muscle cramping by liver area, discomfort from liver area, Skin is discolored with dark patches, The least little thing that touches my skin can start the itching. Putting pressure on any part of my body, can start the itching..I have to wear silky type of clothing because anything else is itchy and uncomfortable and hot. I keep my room at 68 degrees or cooler. I have to talk to myself several times a day about all my blessings or I could just stay in a depressive state. I watch alot of comedy to keep me laughing. Racing heart, periods of shortness of breath were so bad that I was sent for cardiology and pulmonary evaluation. Tests proved negative for any problems with my heart or lungs. Thank Goodness for some good news!!! Legs and feet feel heavy, numb at times, tingling with pins and needles. Dry mouth, Dry eyes, not wanting to know of any problems or issues because I don't want to have to deal with anything. Hate reading mail. Nausea, heartburn, acid reflux, have to sleep with head elevated. Back hurts if I stand or walk very far, have to sit or lean over something, had MRI done on my back, waiting for the results on that. I am so thankful for this site because I was beginning to feel I was off my rocker and needed to be committed somewhere. Its hard to believe that one person can have all of these symptoms and if it is hard for me to believe and I am the one experiencing it, no wonder its hard for our families. I have always worked, always worked overtime if needed, extra days if needed. Planned everything for my famiy, such as outings, vacations etc... Lots of energy!! I have 6 children and 12 grandchildren, my time when not at work was entertaining the precious grandchildren, eating out with friends, reading. Now I do good to sit thru a movie, usually I have to record it and it may take me 2 or 3 days to watch all of it. It feels so good to express my feelings. Thank you to all for listening and take care of you.
The more symptoms I read from everyone I feel relieved that I'm not the only one! Yes yes to 90% of those symptoms.
Keep strong!
Well, well, well, how surprised am I? Itching ears! This is something that I began noticing (because it was driving me crazy) about 4 years ago - never connected it to PBC, nor the tinnitus that began around 8 years ago. So glad I found this site and that this question was raised.
I was diagnosed with PBC almost 19 years ago and have pretty much every symptom listed above. I have been on Ursofalk for about 10 years, and this year, according to my specialist, my 'levels' have dropped below what they were last year - I have yearly 'liver function' tests. At the time I thought it was great that the medication was working its magic - not only was it slowing the progression of the disease down, but it seemed it may be reversing it. Alas no, says my specialist, the damage to the liver remains (and I thought it rejuvenated itself, silly me, Lol) so the symptoms will remain also.
Since this discussion with my specialist I have actually been taking more notice of the symptoms I am experiencing and have realised that a few of them have only begun in the last 4-5 years, whilst I have been on Ursofalk. Maybe it's a case of 'clutching at straws' but for some strange reason I had translated 'slowing the progression' to mean 'end of new symptoms', obviously this is not the case. I am a fairly logical person so I am really quite amazed by my 'translation' - marshmellow brain perhaps.........
Had anyone developed endometrial hyperplasia? One website said it could be a side effect from the Ursofalk tablets.
My legs feel like lead weights and my right ankle hurts, I can hardly lift them to get up the stairs. I have gone off tea and coffee also and now my right itchy ear is explained in happier.
I snap, swear and lose my temper which I have never done before.
I have a constant temperature of 37.9c and I sweat a lot in bed.
I'm lucky to not have periodontal problems or red palms.
I should include Encephalopathy due to high ammonia levels and low albumin levels due to vomiting and a poor appetite and lack of protein in my diet. They put me on Sustagen hospital formula. Yuk
I have the ear itchiness, in the ear canal, but it isn't all the time. I have the tiredness, which is a hallmark symptom of PBC. Brain fog is a symptom too, but I think mostly due to the fact that when you are tired, you have foggy brain. My mother had peridontal disease and she had PBC, but I don't have that. I've always had anxiety, so not sure about that being a symptom.
Symptoms vary from person to person and depend too on what stage you are with the disease. I also have right upper quadrant discomfort bordering on pain at different times too.
Not sure if this thread is still active but i have just found it and it is making really good sense. i am 33 and was diagnosed with PBC about a year ago. My mum was diagnosed with the condition about 10 years ago so it appears to run in my family.
my symptoms include:
tiredness
itching (has reduced since starting urso), mostly in legs and neck
joint pain, some days it seems worse than others
legs and arms feel really heavy some days
puffy feeling ( legs arms fingers feel swollen but not)
i get the vibrating inside, like a heartbeat but all over body.
anxiety
brain fog
headaches
sinus problems (ryinitus)
sore mouth and toungue (feels like its been burnt with hot liquid)
acid reflux ( makes me feel dizzy and sick)
bloating and discomfort in my stomach area
bowel problems (been told for years IBS), constipation
metal taste in my mouth and blood tastes funny
post nasal drip
i don't get the itchy ear but do get it in the ear passage at the back of my mouth.
i have noticed that my liver doesn't like cream, cheesecake, eggs, cakes and biscuits and bread. i have tried to eliminate gluten from my diet but this is hard and i'm not sure if it was making a difference.
as well as the urso i am taking ranitidine for acid reflux, which appears to help and have just been given amatriptiline for my bowel but have not tried this yet. up until a year ago i didnt even like to take paracetomol and now i am scared to put anything through my liver that might make things worse.
i have really enjoyed reading posts on this site. when i was first diagnosed i did a lot of reading and joined the PBC foundation but i found a lot of the information was very doom and gloom and made me more anxious. these posts are good because we get to share our experiences without terrifying the life out of each other.
Its reassuring to see someone of a similar age with the same condition on here!
Not sure if this is still an active post either, but was good to read peoples lists, especially as so many symptoms overlap/ are the same as each others.
I have so many additional symptoms and it was a relief to see people with a lot of them.
We are all just big balls of symptoms LOL. I had the fatigue, the itch Im guessing is the bugs. That was so bad that I looked as if something attacked me. Brain fog, which I take meds for, helps somewhat, except for when Im extremely exhausted. Brown spots on the face which is called hyperpigmentaton. I was really bad with the fatigue right before I was diagnosed. I was 36 & studying cosmetology with a lot of girls who were much younger than I, so I chalked that up to just trying to keep up the the younger girls. That was rough. I was in & out of the hospital my entire adult life due to digestive issues. First they thought it was my gallbladder. Had it removed at 19, then I was diagnosed with a blood born liver disease & placed on six months worth of treatments for something that I never had symptoms of. I later was told that I never had it, that PBC was the culprit the entire time.
I have all of those. Thought the itching in my ear was from getting soap in them when I wash my hair. The ILS is something I have had for years, long before I was diagnosed with PBC.
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