Brain Fog

[Krichards1971]

Good morning everyone! I hope all of you are doing good. I had my liver scan this past week but have not received the results yet. I feel pretty good so far. Some days i wake up and feel great and think i got this. Then other days i wake up and feel drained before i even get up and i feel so bad i think i just dont know anymore. At work sitting in meetings sometimes i think to myself if i could just take a nap i would be better. And the memory problems scare me because as a nurse and MDS coordinator its so important to not make a mistake because MDS is based on how we are paid. So what if i lost my job or end up having to quit? There goes my insurance and everything is rediculously expensive. But i cant help but worry. Do any of you worry about losing your job because of the brain fogs/memory issues? Well, on a brighter note, Happy Labor Day weekend! Hope everyone has a great and safe weekend! I will let you know when i get my results. 😊

[Shulsey]

Myself, I've lost two jobs in five years because of this disease. It seems to take over on some days but like you I also have good days. On the other hand, some PBC'ers still work & live life symptom free. Wish that was the case for me. You'll notice that PBC effects each one of us in a different manner. Im just 43 yrs old & look like Im as healthy as anyone. Im currently in the middle of appealing my disability claim & was informed by my attorney that my age & the fact that I look just fine can make the fight difficult to get my disability. I do know one thing for certain, that the big man upstairs has each & every one of us in the palm of his hands. Pray a lot & talk with Him because He is honestly the only one who knows his plans for us. Try to gain some positivity through this. I know you worry, as we all do. But, in tone you'll learn to live your life as best as you can, one day at a time😉😊

Stay strong❣️

Shannon

[Shulsey]

Oh, there is a medication that Im on that is for the brain fog. It's called Xifaxan, it helps to break down the amount of ammonia & toxins in my blood that my liver can no longer filter out. But when I become extremely exhausted or in a panic for whatever reason, I can notice the brain fog kicks in.

[drewh in reply to Shulsey]

Yes Shulsey, have notice the BFog kicks in as the heart rate goes up, for whatever reason - mood change, mild exercise are typical triggers. Have just started on urso. Not noticed anything yet.

As to the itch, that has been mostly mild. Have had contact itching for many years. Socks, and bed clothes were/are often causes. PBC itching seems to be little understood, same as he brain fog. The itch seems to be related to serum biliverdin. Mine at last look was low. So that figures. What I had not expected was a horrendous thru the nite (>5hrs) itch on my hands after I ate a mango which I mistook in the packaging for a papaya (Mango is member of the itchy poison ivy family). Bleary-eyed I forlornly peeked at Dr Google for any handy remedies. One person said to cover skin with honey. Found sound some honey bought by my dear wife, and she's been dead 10yrs next week, so not expecting much. After 3mins of the honey I decided it was futile and washed it off. Finally got back to bed. I then realised itching had dropped at least 50%. So tired I went to sleep in mins. So has anyone noticed that PBC comes with an increased response to other itch causes, apart from biliverdin dumped in the skin?

Xanthelasmas, especially round the eyes were probably an unrecognised wake up call to PBC about 2yrs ago. My PBC Dx finally came a couple of months ago. Have attempted to go gluten free recently, and the xanthelasmas seem to have slowed.

[Shulsey in reply to drewh]

Im unsure what biliverdin is. But questioned what causes the itch to my heptologist. He informed me that it is from the bile salts that haven't anyplace to go because our bile ducts are comprised. In turn, the bile salts secrete through our pores causing us to itch. Im guessing a good healthy diet would help. Try eating food that doesn't need too much bile to digest possibly. Plus a nice soak in a warm tub with Epsom salt have helped a few PBC'ers. I had the itch something awful at diagnosis in 2012. It looked as if my legs had been attacked by a cat lol. Now that Im in the later stage of PBC it only occurs when I wear something that has elastic. For example, when I wear skinny jeans my legs will itch that night or elastic pants & where my bra leaves marks in my skin. Other than that I no longer have the itch so much

[gwillistexas]

I feel great in the morning but seems as the day goes by, I think of nothing but sleeping.

[Hidden]

hi have u been checked for fibromyalgia i have pbc and 2yrs ago was having same probs but i did hurt as well a friend suggested get checked coz she has fibro and trying to have a conversation was ridiculous between us we needed a interreter to fill in missing words but defo the fibro does braing fog and fatigue good luck

[Krichards1971 in reply to Hidden]

I also have fibro

[cfsummerford72]

On the 14th of August I did loose my job. I didnt have an issue with my work performance. I just shut everyone out and i did use my lunch hour to take a nap. At any rate ii found another job but I'll have to wait on insurance coverage. So after the meds i have ill go cold turkey from my meds. I priced urso without insurance its crazy expensive. So trust i completely understand your worry. I was there on pins and needles. I was always double checking making sure i didnt mess something up in the end if you have an illness (more so) one they cant see or know anything about they will see you as a liability.

Stay strong!

Connie

[Nanajo1962 in reply to cfsummerford72]

Sorry to hear about your job situation. Surely you qualify for assistance to maintain your labs. Maybe inquire at your Dr.? We try to prepare for such a time as this.. prayers for a answer you can navigate. Keep posting. You are not alone....

[Sachin1234]

You can get 90 days of supply If you buy your prescriptions online. Keep in mind on line buy will help for at least 2 months if you lose or change your job.

[Maureen25]

Hi I also get up some morning and just don't feel well sometimes dizzy even lose balance, those days work from home but I find that I have to make myself a book on how to do my work as I can forget, i use to have good memory. Does anyone else suffer from cramps in legs and hands, I also get sharp shooting pains in hands which can last a minute, also in groin that goes straight my stomach.

Just been made redundant and worry how I will cope in another job not been able to work from home, if I get one. Waiting on hospital appointment as my doctor not happy with what I am experiencing . Looking at a brain scan and my nerves.