Can't sleep

[Oldbloke1]

I can't sleep due to pain in my stomach and bowels and muscle pain just wandering what people do for sleep

[IAmTheGlue]

I’m sorry you are unable to sleep. You are not alone.

It’s 5:24 am and I’ve been up for over an hour. I wake up every night at 4-4:30 am. I go with it. I get up, do my yoga, Tia chi, elliptical , etc. Right now I’m relaxing in my hot tub for muscle/ joint pain.

In so far as actually getting to sleep, I take melatonin. I take 20mg at bedtime. I was combining that with a casein protein powder smoothie bowl at bedtime and that worked well.

Right now my dr has recently tripled my prednisone dosage so um… yep just not sleeping. 🤷🏻‍♀️

For muscle cramps/pain I use Hylands muscle cramp remedy, yoga and my beloved hot tub. If you have access to water you can be submerged in like a deep bathtub, swimming pool or hot tub, it’s a lifesaver.

I hope you feel better soon. Try the melatonin if your doctor okays it.

[Barneymiller in reply to IAmTheGlue]

I can hardly walk

[Michi1]

Have you been tested for celiac disease? About 40% of people with PBC have celiac disease. Even if you test negative, you may have a gluten intolerance. Cutting out gluten could get rid of your pain and reduce chronic inflammation you don’t even know you have.

[Oldbloke1 in reply to Michi1]

I haven't been tested for PBC or celiac disease, I've just changed doctor's because I was getting nowhere with the old doctor I've got a appointment this afternoon

[butterflyEi]

Can you keep a food diary for a couple of weeks and see what foods (if any) irritate your stomach and bowel. For muscle pain you can use paracetamol or something like Voltarol Gel and rub in to the painful area. Please do check with your doctor though as not everything is PBC although sometimes a lot is written off against it! As Michi1 has suggested gluten intolerance can be a problem.

At night I often use the free guided sleep meditation recordings on YouTube which help my sleep pattern. Choose a voice you like, I find Michael Seeley quite a neutral voice.

[Oldbloke1 in reply to butterflyEi]

Thanks I will do

[butterflyEi in reply to Oldbloke1]

Just a quick extra thought - I am reading Professor Jones's book The Definitive Guide for Patients with Primary Biliary Cholangitis. I need some information before seeing a doctor. I wonder if you would find it a useful reference tool. It is available on Amazon. I have the 2nd Edition on Kindle. If you do decide to purchase it make sure to get the 2nd edition. Best wishes

[Oldbloke1 in reply to butterflyEi]

Thanks