This is just me venting really. I was diagnosed about 1 1/2 years now, and have been on Urso for that long. The fatigue is still a HUGE problem, and it makes me such an unhappy person. My neurologist says I also have Fibromyalgia... if that's a real thing...I'm always so moody, and temperamental because of my extreme exhaustion, and pain. I have 2 young children at home which is tiring enough without the autoimmunes. I used to be so bubbly, fun, and the life of the party. Now I'm just miserable, and tired. I don't have the energy to do anything. A trip to the grocery store is literally a project. It's affecting my home life, and I feel like I'm squandering my time with my kids (which by the way are at GREAT ages) and husband because of my bad mood ALL the time. Even if I take a nap during the day, whether it's 30 minutes, or 3 hours. The pain in my joints just makes it all worse too. Around 5 p.m. every night I can barely move. Which then makes me even more tired, mentally and physically. I just want my old self back, because I don't even recognize this version of me at all.
PBC, Tired, Moody, & Fibromyalgia??? - PBC Foundation
PBC, Tired, Moody, & Fibromyalgia???
I have the exact same thing. Except i am not on Urso my g.i dr put me on "watch" so i deal with this daily. I am always irritated and tired and no one understands how i feel and it sucks because i want to just feel normal again.
I don't know if there is a normal anymore. This has been 6 years now of NOT NORMAL!
I have PBC as part of the autoimmine disease Sjogrens. Sometimes PBC appears with other autoimmune conditions. These things can appear similar to fybromyalgia and have similar symptoms with especially joint, muscle pain and dire fatigue.
I would make sure your gp knows just how much you are suffering just now and invesigate whether you have something else going on as well.
I am fortunate that I am older now and my four boys are grown up .
There is nothing worse than that awful fatigue when you have so many demands on you with a young family.
Hope you get some answers soon. x
Hi Cstar1079
I note a previous post you have was about vitamins and I wonder if your doctor has checked you for low vitamin D and vitamin B12. Along with the PBC I have been diagnosed with pernicious anaemia which also causes fatigue as a symptom. Since having the vitamin B12 I feel quite a good deal better although here in the UK the doctors will only give a 10 week prescribed dose so many people with PA self inject. I realise that we are all different with PBC (for myself my main complaint is the "itch" although I also get the fatigue) and we all get a mixture of other autoimmune diseases so the caveat really is that if you can get tested for these two vitamins and find you are deficient then your care provider may suggest supplementing even though the general opinion of many is that we should be able to get it from our foods, unfortunately this is not always the case. I see you are in the USA but are you in a State that gets lots of sunshine? When I was tested for vitamin D deficiency I had just returned from a sunshine holiday just before winter the result came back adequate so I chose to supplement vitamin D in the winter. I also believe we can become overwhelmed with the idea of PBC which removes the bubbly out of us. I cannot imagine what it is like to also cope with the fibromyalgia but I wonder if you have identified any foods that can cause a flare and with that in mind I just had a quick google and am putting a link which may be interesting to you. I do believe foods can cause us problems and in general I try to eat a mixture of foods rich in fresh fruit and vegetables. The down side is when tired it is much more difficult to prepare foods or even work up the enthusiasm and with little ones I suspect that job is even harder.
webmd.com/fibromyalgia/guid...
hope this is of some help to you
best wishes
Yes it is a struggle everyday! Thank you so much for the help I truly appreciate it
I second the above post about vitamins and minerals. Liver malfunction stops the absorption of fat soluble vitamins, such as Vit D and others, plus you need Vit D to absorb Calcium. So, as well as a full Vit and Min check, you possibly need checks for osteoporosis, arthritis, etc. In the Spring?/Summer? edition of 'Bear Facts' it was revealed - in a report from the PBC expert consultants - that painful joints and muscles is one of the most common symptoms of PBC, yet this is still often ignored and pooh-poohed by GPs. Get a copy of the Mag, and take it along to your GP and insist on more checking.
Fibromyalgia is now acknowledged, and I believe it is now considered to be another autoimmune condition (NB Sjorgrens, PBC etc are separate conditions, and all are autoimmune, and yes these conditions often go together. However, they are separate and should be treated separately by their specific consultants. Amitripyline is often used to treat Fibro, now. Also a tiny dose of it may be enough (I have 10mg tablets - for severe menopausal insomnia - but I only take a 1/3 of a tablet [GP's advice!] when I cannot sleep). It could make all the difference, so maybe ask about it. If you sleep better at night it may help in the day.
Also, 2 things that are hard to do, but that may help with the pain and tiredness, are: First to do some very gentle exercise, preferably every day, but something you enjo, that will take you out of yourself. Corrine, who started the 'PBC Foundation' walks her dog and also gradually built up to cycle ... miles. Second thing is to try to treat yourself, coddle yourself, do things you love ... have fun, and avoid stress! I know ... easier said than done, but all autoimmune conditions flourish on stress, and are hugely helped by fun, happy activity and spoiling oneself, when you can - try to build something into every day!
Hope this helps.
My son, now 27, has two autoimmune conditions; ulcerative colitis and Primary Sclerosing Colangitis (PSC, very similar to PBC). He has been successful, and his liver function values and inflammation markers all returned to normal, with a combination of diet (gluten and dairy free), vitamins/supplements (similar to Dr. Burton Berkson's recommended regimen for auto immune conditions), and use of Low Dose Naltrexone (LDN). Although diet and vitamins/supplements alone initially reduced his liver function values and inflammation markers, they were still outside the normal range a year later, and until about a year and a half ago when he started LDN. Within 2 months his liver function values returned to normal, and within 4 months his inflammation markers returned to normal. I believe a strategy of diet, vitamins/supplements and LDN is a good strategy for addressing autoimmune conditions like the ones you have.
I suggest researching all of these: Google Dr Burton Berkson, watch his videos and read his books on LDN, Alpha Lipoic Acid, and B Vitamins, and follow his suggested regimen of vitamins and supplements to address auto immune conditions; eliminate gluten and dairy from your diet, since auto immune conditions are largely believed to start in the gut, and are caused by leaky gut or other intestinal inflammation that allows unwanted proteins to escape the intestinal lining wall and then be treated as invaders whereever they wind up in the body; read about LDN........look at the LDN Research Trust web site, follow links to Dudley Delaney's web site, and join the Yahoo LDN User Group blog, and you will start to understand how this inexpensive and limited side effect drug has helped tens of thousands of users to improve their immune systems.
Contact me with questions after you have done some of the above research, and I will try to point you toward other resources for you to examine.
I've done a little bit of research on fibromyalgia and to be honest I don't believe it is anything other than a concept that Rheumatologists are fond of. While there is a lot of - sometimes strange - research on it there still doesn't seem to be any real world wide consensus or agreement that its a disease or condition.
I come at this from an SLE angle and believe a fibromyalgia diagnosis should be kept well away from people with established complex illness. It muddies the water and can de-motivate Doctors from looking deeper at what might be causing such full on fatigue.
I was diagnosed with it. I now totally reject it and have taken it off my medical record.
I actually agree with you, I have denied Fibromyalgia for 6 years. Which is how they found the PBC. However 6 years later, 32 doctors later, and not one other diagnosis. That's why in my post I put a question mark after Fibromyalgia. I have heard both sides now they say that there is proof that Fibromyalgia is a disease and have medication for it. I don't know what to believe
I must admit I come at the Fibromyalgia from a more Medical Anthropology/History angle. (Studied some a uni)
I've looked at the psychological labels that a lot of male researchers apply to female subjects and I just want to pewk. Its almost medieval in its sexism. I've also read a lot of the strong criticisms and discussions made by Doctors from other disciplines about it.
One thing that really creeps me out is Rheumatologists propensity to tell fibro patients that you "need to accept that you will be 'weak' and in pain for the rest of your life" (and there's nothing we can do). This line seems to be a standard part of their practice -
Nothing like making a woman feel helpless and useless forever.
I copped this one when I was really suffering from pancreatic insufficiency. Creon - (digestive enzymes) pretty quickly got rid of the fatigue and muscle pains and what I knew was definitely not IBS.
To be honest my main problem with it is not that its proven or unproven.
It's because it has - and continues ?!?!?!? to cause so much carnage. Its all too often misused as an excuse to fob off - apparently 'neurotic' women (a term some very senior researchers in this field are very fond of including in their scientific ? research) In modern psychology - neurotic - is no longer really considered a valid scientific descriptor - And you only have to read a little bit about how these Doctors define - us - to know they are not strong in the psychology and insight department.
Personally I'm now suffering from renal damage, some digestive issues and peripheral nervous system problems that would have been so easily preventable but for the diagnosis of fibro - so I do have a massive axe to grind.
As for the 'overwrought' nervous system/catacholamines - biological side etc. I cant say I'm an expert. But from an Anthropological perspective its interesting that the treatments are strong sedatives and antidepressants.
Sorry, I know this doesn't answer your question. I still wonder sometimes whether I should brush some things off as fibro ? instead of dragging myself yet again to another rude dismissive Doctor. It does do your head in as its logical that protracted anxiety and stress would make you exhausted, especially if you're already unwell with something. I know fibro is based on 'something' that is actually happening. Its just what that actually is and how its been interpreted is what does my head in.
Historically - (sorry, I'm a train spotter) - but for thousands of years, Doctors have constructed some really multidimensional intricate complexity in their practices on the back of beliefs connected to astrology, philosophy and religious views of purity, sin and redemption. ie. 'Sickness as punishment for sin' - endurance as redemption. Not entirely helpful on any real medical level - but they had no doubt about their complex, wacky - & sometimes torturous practices back then. No evidence required. No questions asked. This is literally where modern medicine sprouted from.
For me, there's no real reason to doubt that history isn't repeating itself now in many subtle ways connected to subjective belief systems. I don't think a little thing like science would get in the way of some of these researchers egos. They might be having trouble with their wives ?
Anyway......apologies for sprouting on.
Totally agree with you! They also labelled me with fibro and ME in 2012 which I completely disagree with! I have had awful debilitating digestive problems since I had my eldest in 1997 It's only now that my BTs are beginning to show damage / problems that they are taking me seriously!! I hate being told 'It's because you've got fibro/ME' I have zero quality of life and I'm now worried that their lack of medical understanding (or care) has resulted in permanent damage!! I'm just hoping that the consultant actually listens this time. I'm writing my medical history and all symptoms down and giving it to them to read because I never remember everything
Yep. Its really gone well beyond a joke. I just wish I could make the 'concept' of fibro completely disappear for all our sake's. I find it really alarming that its just managed to slither in under the radar and cause us so much discombobulating doubt and damage.
I really hope this phenomena hasn't caused you too much harm and you get a proper and clear answer this time.
I go a tad blank when I see my Doctors too. I have to remember to keep a copy of the questions for myself as I've handed over long lists only to have them give it a cursory glimpse, followed by being looked at blankly - followed by a lovely grunt to finish off. (this mostly occurred back in the fibro label days) Now when I get a little slow and nervous they actually take the my list out of my hands to speed things up........(also leaving me somewhat wigged out).....but at least they're showing a reasonable interest now ?
Just remember to have 3 or 4 core questions at hand if things go wobbly.
If you think your'e being stonewalled again - it probably wont achieve anything - but just for your own sanity - ask them a lot of why's - like - why aren't you answering this reasonable question ? Why aren't you respecting what I'm saying ? - Did you look at those pathology results ? Why are you prepared to risk my health by not acting ? Why are you discriminating against me because of a fibro label ?
I've actually heard of people telling their doctors that I'm recording this on my phone.....so I can remember whats being said. (Might be a tad aggressive ?)
In the past when things have gotten a bit hairy - and I'd pretty much lost the will to communicate - I've taken medical advocates in with me. (specialist social workers) It does give Doctors a bit of a fright and makes them sit up and listen.
Really really hoping your consultant is a good one. Sounds like your'e long overdue to find one with an actual soul and half a brain. If your BT's are showing something now you would really think you wouldn't run into a a problem this time.
Likewise Freckle!
This was suggested as my diagnosis about fifteen years ago by a Rheumatologist who simply couldn't make the symptoms add up so they land you with that.
By the next Rheumy five years later they had binned the diagnosis thankfully. I like you feel it is a diagnosis of exclusion when they havent really got to the bottom of the actual autoimmune condition causing the havoc with your body!!!!!
They just seem to use it to get you off their back so they can dump you in no mans land with no treatment.
I had a massive improvement with steroids and that made them think again thankfully.
Hope you're well cuttysark !
I completely agree! However after my latest results I’m not sure what else to think. I did go back to the doctor. I go every 2 months for my blood work. He sent me to a rheumatologist that did extensive tests. Everything cane back normal EXCEPT for my PBC. However it’s really hard for me to believe that PBC can be the cause of all my pain, fatigue, brain fog, and everything else. It’s SO frustrating that there isn’t just one test to check everything and tell you exactly what you have. Why can’t something just be easy for once
Hi.
Its Christmas so I'm a bit bewildered and cross eyed.
I still have the unresolved bile duct problems - even though pathology tests back this up now and Doctors are happily prescribing me Creon to replace missing digestive enzymes. They thought they were sugar pilling me. But more gut problems arose.
You're right. Why cant things just be simple. I have SLE Lupus so a nasty flare was probably the culprit.
We all need a magical lovely super duper generalist specialist who could take all the fighting and grinding uncertainty away - instead of going insane with different attitudes and ideas from - a delightful array of Doctor personalities. Yuk.
Have a great Christmas. I'll be watching everyone else eating.
X
Oh Freckle1000...
I’m sorry. I hope your Christmas got better. I hate the thought of others going through the same crap with doctors as I am. Although it is nice to know I’m not alone or crazy. Thank You for sharing with me. I truly appreciate your time.
Hi Cstar,
No....you're not crazy. Its the fragmented medical system that is.
Don't ever let any Doctor apply any fibro/psychological label to you that your not comfortable with. When I see multiple specialists they all tend to like to put in their ten cents worth about my mental state (which is usually one of barely suppressed rage) and this can create a kind of medical record vortex of opinion that can feed off itself. I've had SLE for 40 years and when the dust settles I've been know to gut a few medical records.
Finding Doctors who are honest and will validate you would be great - but I know how hard this is. Don't give up until you have the answers you need - no matter how torturous it becomes. You're definitely not alone with this dynamic.
A good honest GP to properly co-ordinate your care is sometimes the key ? although ultimately its up to the specialists to diagnose.
I'm not saying fibromyalgia isn't a phenomena - I just know very subjectively that its misused and misinterpreted by a lot of Doctors.
Still a bit wonky at this end but I just thought I'd say - I really really hope you can get some clarity as to why you feel so unwell and you can get to the point of feeling better in more in control of things.
Hoping 2018 brings some better health and certainty for you.
xoxoxoxoxoxox
Hi Freckle1000,
Thank you so much for shining some light onto the situation. It truly helps me to hear from others. Especially someone with as much knowledge as you.😊
No worries.
All the best navigating the system. Try not to take the Doctors too personally.
: )
I have had Fibromyalgia since 1998 when the specaialist said i had all the painful pressure points, i knew nothing about it so i googled it and joined the Fibromyalgia group. I have very painful muscles and fatigue but have learnt to live with it. I was given Amitriptyline but it didn"t agree with me so i decided that i would control this illness and not let it control me. I made a rota to do things each day rather than all in one day like i used to although i did have to give up work. It took me 3 years to get myself well enough to go back to work but i did it. I also lost some weight which helped, when my muscles are very sore i use Piroxicam gel. I have more good days than bad days now unless i forget and overdo things.
I have also now been diagnosed with PBC 2 months ago and been put on Ursofalk so far the fatigue has not got any worse than my Fibro one which is good, the only problems i am having is slight itching when i go to bed and Diarrhoea.
I am not sure where your mood swings are coming from and it is hard with young children to look after mine are grown up but i do agree with taking vitamins. I take a Multivitamin and Mineral tablet each day i also take Milk Thistle daily and when the itch gets a bit too much i use Aloe Vera gel.If i get bloated i take Acidophilus, I hope you get sorted soon hun .
Honestly I believe that my mood has to do with the pain I’m in 24/7. I’m up all night ITCHING TO DEATH. Running around for kids and with kids all day. Constant pain and fatigue and I never stop. If I stop at all throughout the day it takes me forever to get started again. Like I’m stuck and super stuff. So I literally am on my feet from the time I wake (usually 7 am) until I get my kids in bed, I shower and finish up (around 10 pm). I know I’m over doing it, but I’m 37 years old! I have kids who have TKD, and Football, and I have PTA, and house work, and dinner, and errands etc. It’s hard to NOT over do it. I hate that something I could get finished in ONE DAY if I didn’t feel this way. Now takes THREE DAYS, because I have to break it all up. If I’m like this now what will it be like in 10 years from now? It’s insane! Now they’re also finding these small to medium tumors (3 right now) too. They’re not cancer which is great but they have no idea why. They won’t remove them because the one is on my radial artery. The other two are right on my nerve in my leg. One is higher than the other more like the right side of knee. It’s probably doubled in size in the last 3 months and causes me terrible pain in my knee. I feel like this is how 80 year olds feel. 😫
Have you tried medical marijuana. I think it really helps ...
No...i tried self medicating with it years ago but it gives me serious anxiety
Hi all, To me, it seems the bottom line is that PBC, fibromyalgia, and many more of our related issues, all stem from "auto immune" disease. Like a steam roller our own bodies are attacking itself in various ways. I'm taking URSO for PBC, and a few other things for this ongoing gastritis I can't get rid of. (I'm guessing my immune system isn't fighting it well.) But getting to the root cause... the auto immune disorder is where I'm starting to do my battle/conversation with my GI. Been doing ALOT of research. Google LDN, Low dose Naltrexone. It's for auto immune disorders. I've watched the videos, read the research, I've even spoken to a doctor/GI near me who prescribes it for those with auto immune disorders. The results they are having is so very encouraging. I've become an advocate for my own health. I will continue my URSO to slow down my PBC, but, I want to give Naltrexone a try and really get to the culprit, this auto immune disorder.
Ive been on urso for over 20 years and the enzymes seems to be under control....weight is an issue and the itching
Weight is an issue for me too. Not horrible but still I’ve gained a lot of weight. It’s so hard to lose with the PBC. The Urso also gives me terrible headaches but it’s the lesser evil I suppose
I am right there with you. I am sooo tired. I have slept off and on all day, you are right, no amount of sleep helps. I wished there was something we could do to get up and get more energy. Im also at my wits end. ..pat
KevinHall10... me too! And the fact that NOBODY GETS IT! Not even your closest friends or family. My husband is constantly “telling” me what I should do to make me feel better. Like it’s SO EASY, like I can control my fatigue, and pain. Grrrrrrr it’s SOOOOO FRUSTRATING!!!!! I like that people on here actually understand and are dealing with similar if not the same thing
My fatigue has subsided since my thyroid doseage was increased. Hope it stays that way. I know what you mean “no one understands “. I get angry inside because no one ever asks “how are you feeling?” For those who don’t have family support, PBC is an isolated & lonely world. My husband is a good man & has told me he is concerned. He has always been a man of few words so I can’t fairly judge his lack of words.
Gwillistexas Hi,
I know what you mean. My issue is my husband doesn’t really WANT to accept that anything is wrong with me. That is the problem. He also thinks that I “seem” healthy, and “look” healthy so I “must be” healthy. He has said in the past that with Cancer patients who are on chemo they lose their hair and look sick. I still look the same (except my weight gain) so it’s hard for him to “get it”. It’s SO INFURIATING!
Yes it is infuriating to put it lightly. And I’ve no doubt he’s concerned but show it! I’m a very compassionate person & always let people, especially my family, know I care.
Gwillistexas,
YESSS!!! I think we as women are much more compassionate beings than men. However... I wish that they were able to convey their concerns a little bit clearer.
Right. I guess it’s a man thing😊 gotta love them 🤗
Soooo true! 😂
Yep, for real.
PBC
Recently diagnosed w/PBC but....
Waiting for PBC Diagnosis
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