I am so tired of being tired. I have had PBC since 2011, Dx. 2015. My old dr. Failed to Dx. Me correctly, chocked it up to depression. It seems like just when I think it's going to be a good day I get so tired I have to lye down. I understand about not wanting to eat. Sometimes any smell makes me sick. It's funny because now my husband tell me to eat, instead of watch how much u eat. I have earplugs I some time use when I go lye down, just because I don't want to hear anything or anybody. Lights,Bright mostly hurt my eyes. I am on an antidepressant, but still feel alone. Hubby is real supportive, but I get so irate with everything. I resently went to a specialist in Denver and found out I am in stage 2. I go again to my liver dr next week. I just wished they would come up with something for this tiredness. I don't take vit, because I have uti with them, crazy but true. Does anyone suffer from sinus headaches and flu like symptom, a lot of the times?
Pat: I am so tired of being tired. I have had... - PBC Foundation
Pat
I do get flu like symptoms from time to time. It seems to come and go. Also, I do get headache more often than I used to. These can be side effects of Urso. The tiredness is something we could all do without. I would be thrilled if I was stage 2. I was diagnosed in May with stage 3. Is your liver doctor in Denver too? I see Dr Kulig at Presbyterian St Lukes.
Pam
Hi Pam...i was dc at stage 3 as well in March of this year...scares the crap I was that sick and did not realize it! Working on just healing my liver now...letting the Urso do its job with the bile ducts and getting myself well!
You might want to try the humidifier as well for those headaches...
Tonia17, it IS scary! My hepatolagist said I was lucky. People have it for decades (which I think I did) don't know they have it and come into his clinic nearly dead! I do have tired spells but I thought it was just my age (63). I went to the doctor thinking they would tell me I had high blood pressure or diabetes....whatever it is, it is certainly a humbling experience, isn't it?
Pam
I think mine got “turned on” in my late 20’s and I was diagnosed at 50...all my health issues for the most part we’re due to PBC. I thought I was in early peri-menopause...
I am in the process of doing some health geneology as I know my grandmother and her mother died of “liver issues.” My focus with this is to help others in my family understand what is going on and feed my own curiosity! I’m back to my great grandmothers great grandmother and I do believe the gene actually came from her husband at that time...that’s where the research is taking me...1820!
My son passed 4 years ago , his name was kirk hall. He had the real cirhorris. He seen d dr kulik. Is rocky still his pa?
I have noticed more headaches also. I contribute to sinus. Fatigue too, but not constant. My appetite is very good. I have a great hubby, but he does not understand this mess. I’m usually in a good mood but it flips at the blink of an eye, usually if I’m taking too much thyroid. Some days I wish I could hibernate & not have to deal with anyone. Not their fault we feel what we feel. I wish you the best. ❣️
Yep, i hear u. When i lye down i put ear plugs, jist not to hear the out side world. My real name is patricia. I put one of my sons name down for my log in lol
G’morning. I’m not sure why I get the way I do, attitude wise. I get off work & think oh if I could just go home & focus on me & me only. Saturday’s are packed with things to get done & church on Sundays. So there’s never “me time”. I feel guilty for my feelings sometimes but seems we are always making sure everyone else’s world spins in the right direction while neglecting our own. 😊
So true, sometime i wish people would know more of our symptons. I always just go lye down now matter if we have company ( which is rare) i excuse my self and jut do it. I feel i give enough and when i need it i do.
Me too. I do pretty good with my energy most days. I guess I get angry inside when I feel everyone around me just beep bops along in their normal. Doesn’t seem fair sometimes. Then if I snap at my hubby, it “ what’s wrong? “. Really??? You didn’t just ask me that, lol!!!
hi KevinHall10_
I also suffer with many more severe headaches than I used to, I generally wake with a blinding head but it wears off as I get up. Never feel alone whilst you have this group to talk to, there is usually someone about somewhere in the world to share with.
May I suggest that the antidepressant may be adding to your problems. Antidepressants can be very debilitating as I am sure you know. There is a good article on the so called tiredness of PBC in the member's section on the PBC Foundation web site. It also gives ideas on managing tiredness through activity. That activity can be as sedentary as laughing and talking to children or grandchildren or as busy as going for a run. All of us have different levels of energy at different times, maybe one of the ideas from the PBC Foundation could help you. I have learned from this resource that a little exercise will help build up tolerances.
Are you on the right dose of URSO for your weight?
Eating little but more often usually seems to do the trick for me when I am not doing so well. If you do not like the smell of food cooking why not try an avocado salad for lunch, lots of goodness in that. Cereals for breakfast, try to avoid those with added sugar, eggs are a good protein so maybe boiled eggs with tuna would make a filling dinner to see your tummy through the night. Maybe a chat with a dietician would help with more meals ideas. Of course if you are not able to manage anything then perhaps some protein shakes to get some goodness into you.
It is so good to read that you have good support from your husband, well done to him.
best wishes
I know where u are coming from the fatigue is life draining as for the headaches and sinus. Had such a terrible time last year with sinus. The headaches are bad woke up in the middle of the nite this week with such a bad head had to get an ice pack then was terribly sick. Spoke to the doc bout these headaches but says its nothing to do with pbc go figure. But the fatigue is something else just got up still really tired thinking how am I going to get through the day so understand excactly how you are feeling. Do try and eat though because that will probably make things worst for you. Hope you feel better soon xx
Yes I do my sinus is constantly bothering me and now I'm getting weird things first my base of my big toe was inflamed and then the other day my left thumb started burning and itching out of no where then it bruised and it went away next day my doctor gave me tests my CRP was high and sedimentation rate was high so I now have an appointment with rheumatologist they tested me for gout no gout no RA so once I go to the specialist still tell me where this inflammation is coming from it does get depressing. I'm tired all the time
I had that but mines gout in toe but tendinitis in thumb
I'm sorry, i feel your pain. That strange, because my toes get cramps, go figure and my thumbs hurt. I went th the reumatoligist and he could find anything either. Just another bill. I put the heating pad on mine. There is hope for us yet.
Hi Pat! I wish I could help you with the fatigue but I don’t experience it to your level. I do get tired a lot and have to lay down during my day and if I can’t because I’m working then I crash by the time I get home...I’m on Wellbutrin and I know that helps me a lot.
You might want to try a humidifier in your room when you sleep at night. Not a small one but one that will treat at least 400sq ft... that helps with my sinus headaches...
You said you can’t take vitamins, have you tried fish oil? Also, maybe try a small power packed smoothie for nutrition? There are some good recipes on Pinterest that I’ve tried with spinach and kale where berries mask their strong flavors. But they are PACKED with vitamins good for our livers to heal!
Hope you feel better soon...
Thanks
I know this is “out there” but I practice a lot of old skills that most people don’t anymore. I can my own food as much as I can during the year...I want to know WHAT is in my food and WHERE it comes from...I know that is a STRETCH for y’all tho!
I also dehydrate a lot of fresh foods for other uses...one of which is to drop a couple tablespoons into my homemade sauces, soups, chili, smoothies, and other cooking. I can put 2 tablespoons of mushroom, zucchini, and eggplant power into my chili or spaghetti sauce and increase the nutritional value with out affecting the flavor.
A dehydrator costs $35 at Walmart...I use the throw always mostly with veggies (onion peels, celery tops, ends of eggplant and zucchini, skins of carrots, potato peelings, on and on...).
Another EASY way to boost nutrition is to make your own bone or veggie broth from your veggie and meat scraps...a small pot of water with some veggies thrown up in there will yield a pot full of good for you nutrition! I will add loads of garlic and herbs, strain and throw some linguini in there for a quick lunch at work or to save in the frig for another night if I’m making sauce, soup or chili. I will even put garlic and 1/4 of an onion in my pasta water when I put it in the stove to simmer...
So many ways to get nutrition into our diets and I bet your tossing a lot of it in the trash!! Save the scraps in your freezer till you can work with them...😀😀
How to find the words to explain to someone without PBC who doesn't know or understand how it feels like to have symptoms of PBC.
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