New Normal...Suggestions Please

[lorilee58]

Trying to cope with the fact that this is my new normal. Several questions.. does anyone else get a rash with the itching? And I so exhausted and drained of energy, however I have problems sleeping. Any tips or suggestions would really be appreciated!

[Ktltel]

Hi Lorilee58,

I totally get it. I'm still fighting it. This new normal. But then my labs come back worse and I'm having new pain in the liver area.... Ugh!! I'm having fatigue too. I literally force myself to do stuff. I sleep OK though. I can't take this weird pain. It feels like a rock in my liver moving around. 🤤

How are your numbers? What have they told you about your PBC?

You're not alone. ♥️

Stella

[gwillistexas in reply to Ktltel]

Ktltel...on the subject of lemon water you & I had, my friend told me she used “true lemon”. Crystallized lemon in a packet. No sugar. I bought it. Love it. Box of 32 packets under $3. 1 packet =1 lemon wedge. 👍

[Ktltel in reply to gwillistexas]

Thanks!! I'll look for it. ❤

Stella

[gwillistexas in reply to Ktltel]

Welcome

[lorilee58 in reply to Ktltel]

Thank you Stella; I am so sorry about the pain you’re experiencing it seems though there is something new to deal with each day. My numbers are not that bad; I was a difficult case to diagnose due to my other health issues. I am overwhelmed right now. Most information on PBC I have learned is by research and my aunt has it. The doctor I have explained quite a bit and want to expect it; but being told and experiencing is quite different. Thank you for responding and it truly helps to share and to know I am not the only one out there. I think the worst part is the unknown. Lori

[ranrace]

Yes, yes, and yes. I have everyone of the issues at some point. Its 330 am and my liver hurts, my two year old rash is itchy like crazy and I have been tired all day. But cant sleep. Its a rollercoaster of a disease for me. Its like a every couple of month cycle.

I was also a kind of hard case to figure out also. 30 year old, male, without any huge red flags on my blood tests. Luckily I moved and my new doctor went on a quest to figure out what was going on.

Still doing fun stuff, so life is ok!

[cazer]

neverhad a rash.... usually liver itch is without any visible signs.... so i would get this checked... however dry skin is common. for itch keep cool especially at night. don't wear socks...

an antihistamine helps at night as it doesn't stop the itch... but makes you feel slightly drowsy helping sleep... but check with doctor before you take.

sleep issues were a big problem for me and over doing it made it worse... but everyone is different. best wishes cazer

[Lulap]

I have very itchy skin, I have tried so many different types of lotions, creams, and body wash, I also use aloe vera gel, I keep my aloe vera in the fridge that helps, I also use essential oils that I mix with lotions and creams. I use tea tree, cottonwood, and lavender oils, therapeutic grade. I ordered my oils from Piping Rock, they have a starter kit that is pretty reasonable, check out the soaps as well, they have glycerine soap with tea tree, and lemon oil, etc. this helps to alleviate the itching sometimes, I say sometimes because sometimes there is nothing that will help very much at times, if I scratch the itch especially my back it itches even more so I rub instead of scratch which is not so easy to do at times, cold packs helps me as well, try to keep cool as much as possible, try it out and let me know what you think. I also take melatonin 3 mg at bedtime that helps me to sleep at night, that my doctor told me to take, but always check with your doctor before taking any over the counter herbs or meds.

[lorilee58 in reply to Lulap]

Thank you so much, looking up Piping Rock right now!! Lori

[Lulap in reply to lorilee58]

Hi Lori, the name of one of the oils is cedarwood and not cottonwood, sorry about the mix up.

[Lulap]

You're welcome. Lulap

[DonnaBoll Administrator]

I've read all of your responses. Having PBC is just plain hard. No one asked for it and we did nothing to cause it. I speak here from my own experience. It's always scary to wait for those lab results.. will they be worse? Something we have no control over but they surely impact our daily lives. Our new normal really proves to be a hard mental and physical challenge for each of us. Maybe we can't work as efficiently, maybe we've lost friends over not being able to attend social events like we used to, maybe we are having trouble adjusting to the Urso, maybe we can't even find a doctor who will listen to us. The fatigue and the itch are something we have never experienced before. What helps both of these becomes often a lifelong quest for so many of us. Our lives are changed for sure. However, we have to come to the point of knowing this is our life now and find ways to live our best life. Easy to do? no... but knowing we are our best selves makes us know how strong and brave we never realized we were. PBC should not be allowed to rob us of living life to the fullest. Don't give PBC that much power. I am not here to minimize how awful some days are. I have had plenty of them myself --- awake in the middle of the night crying over the itch, asking God to please make it stop. We are all in this together. Sharing can make such a difference to someone who is feeling alone. I don't someone to ever feel alone here. Someone is always here to listen.