Does PBC cause foot and hand pain?

[Mommyofmany]

I was diagnosed with PBC about 18 months ago. I have been having terrible pain in both my feet and hands. Is this something that is related to PBC? There is no real swelling just an ache that hurts so much that at times it wakes me up at night.

[OdinsMom]

I had the same with PBC. It was hard to walk when I first woke up. Hep has said joint pain and the pain and my feet & hands was caused by PBC. It went away after transplant

[HermansMom]

I have hand, feet and just about every other joint/muscle pain...although not all at the same time. I generally don't have any swelling/redness either.

[Smokin5520]

I too have pain, but I also have Fibromyalgia which causes that type of pain. I do the protocol from Fibromyalgia Treatment Center. Look it up on the Web.

[Whatsthedeal]

My hands and feet tingle

[Yankeerose3]

When I stand up my hips hurt so bad it's hard to walk till I start going The same way that my knees hurting so bad and then my feet tingle doctor says I have neuropathy but I'm also a diabetic. I am told that PBC does affect your joints

[OdinsMom]

PBC can cause hand, foot and general joint pain. My fingers and sometimes toes would also lock up

[AllHis in reply to OdinsMom]

That's how I described my right foot to my padiatrist. He looked at me like I had 6 heads. My toe joints lock in place and refuse to bend. Very painful. And the two feet must be separated by a pillow at night. They can't touch.The more sleep or still I am, the more painful my feet.

PS not diagnosed yet...

[OdinsMom in reply to AllHis]

Pretty sure podiatrist hasn’t even heard of PBC. My toes once went into cramp/contracture and were pointing straight up will foot was flat on ground. How they didn’t all break I have no idea. Hope you find out what’s going on soon

[AllHis in reply to OdinsMom]

Thank you. Finally headed in a good direction, getting tested and being heard. You wouldn't believe all the rabbit holes! Seriously.

I thought it was Dystonia in my feet. I was diagnosed with Dystonia in my neck, tried upping the Parkinson's Rx for my foot when it helped my neck. Made things worse. Today I'm off the meds & am told it wasn't Dystonia. Sigh.

So of course it's phycological. NOT!

Trying calcium and D supplements currently. Blood tested low, and X-ray showed demineralization in my feet.

Love this group. Very hopeful for answers soon.

Hugs!

[OdinsMom in reply to AllHis]

Oh I believe the rabbit holes. I went 10 yrs being told my itching was because I was pushing 40 lol. Hard to find a dr that knows about PBC as it's still considered a rare disease. Do you have elevated liver enzymes and tested for AMA M2?

[AllHis in reply to OdinsMom]

I was just told 9.4 on AMA M2 was normal. Suggestions?

[OdinsMom in reply to AllHis]

9.4 would be negative on AMA M2. There are about 5% of the people with PBC that test negative but obviously unusual. Find out what your liver enzymes are: ALT, AST, and especially your ALK PHOS. There is actually a criteria to diagnose PBC

[Nellies47]

Hi. Was diagnosed pbc 18mths ago too. I have terrible fatigue for a few yrs before diagnosis, I was told I had depression 😡. Anyway.....

I'm having a lot of joint and muscle pain. I was admitted to hospital last month with it and because I was extremely weak. My crp was 67 and saw rheumatologist. She feels this is definitely autoimmune flare , possibly due to pbc or maybe another autoimmune as well. She mentioned lupus ,ANCA or wegeners . I also have chronic sinusitis and hypothyroidism since I was a teen.

I'm now on arcoxia, anti inflammatory meds, and currently weaning off them. (Can t be on them long term)

The pain eased but didn't go fully.

Now with weaning off them it's back.

My rheumatologist says I may need plaquenil if pain doesn't settle.

Hope this helps .

Nelly

[Marriage01]

Trust me my Plaquenil made ALL the difference

[Marriage01]

In a positive way. I had very high liver enzymes for about 18 years before my GI sent me to Hepatologist at the Advent Liver Health Transplant Hospital.I had by then had at 50 yrs young severe acne (never before had acne even when I was a teenager)

Had liver enzymes almost at 900 was top #

Had the itchiest legs & arms was told had RLS (restless leg syndrome) so put me on meds for this.

Still itched it was so bad barely could sleep.

Body aches n pains for 20 years I was told too young for arthritis or something serious soo I kept taking Tylenol my body n neck n shoulders n hips n back always so sensitive

I’m fit and not over weight

Became problems with gluten

With eyesight

With hypoglycemia

With hypothyroidism

With extreme low vitamin D

With extreme low B12

Inflammation so high omg

Rhuemotologist diagnosed me:

Lupus

Fibromyalgia

RA

Bone scan: showed osteoarthritis in spine n now hips

Use to cook and chop no longer can my hands cut a steak or write for long without locking up

Feet, toes and hands all numb, trip and stub my toes constantly, burn my hands don’t notice till later.

Feels like bamboo shoots being jabbed up my toes to tops of my feet.

Told have neuropathy

I look 40 I’m told and not 52 n since I live in sunny l Cocoa Beach, Florida in the states and im of Puerto Rican descent Im tanned soo what do I hear from docs “well, you look with good color and look healthy Miss so maybe just now being 52 and we’ll life or maybe your depressed or are you sure you feel All THESE THINGS”

Just to be doubted and questioned for years. Going from fulltime and owning my own business and raising 6 kids and now I can’t even swim in my own pool and I NOW have the proof in the NUMBERS from the labs. I’m last few years, my family seen huge downward spiral I was told had 3 months to live at time the pandemic hit the world and ALL MEDICAL HELP was shut off to me, my worried kids and loved ones to even myself. To know wow I knew all All all those many years n looked at my docs like I had 3 eyes smh

Such a shame to all of us.

Welp, I fought for myself from my bed making calls n begging all who answered n finally got doctor to zoom me. But now even all labs were closed off to all sick people and the world ofc. Sooo, my docs sent my most recent numbers and for past few years numbers to this transplant place n zoomed me and thank GOD for

“URSODIAL” or “URSO”!!!!

Ty God I thought there was no hope. I prayed. I called and called everyone but the news media literally was not just for myself BUT to not have a plan for ALL sick people if EVA a war or pandemic etc to NOT be able to get any urgent care. I needed just a nurse or someone to draw my blood for labs n that was shut off.

Heoatologist/He called in Urso and I finally like 4 months later got labs done at hospital I was admitted scary no visitors etc because of COVID too. Which I them caught COVID as well.

But, HERE I AM with the perfect liver numbers consistent best labs ever. So perfect it’s like the healthiest youngest person ever with amazing nooo high labs.

No acne

More energy

Nooo I’m NOT DEPRESSED

Noo I’m not lazy sooo don’t be hard on myself

Nooo I’m not dying

Yes I’m the healthiest I’ve been in 25 years.

I have lupus n this has made me have all this inflammation.

I no longer worry if others think I’m lazy I go at MY PACE.

I thought I would never see myself old but now I can see a beautiful healthy future.

Im here and life feels amazing.

Be your advocate. Fire the docs and go to next one. You know your body inside and out don’t let anyone make you feel you have 3 eyes.

Shame on them.

Pace your life n so what if you only cook a quick meal three nights a week or now you have your groceries delivered or wte

Just listen to your body n live in the moment.

Each day tell yourself I’ll make two or three calls at least in my behalf for the positive of my mind and health. Make a diff nobody coming to your door. I know how tiring even a phone call can be especially when nobody might believe you.

Keep going keep screaming to the roof tops.

Think outside the box how to make your life simplified. Downsize to small place. Don’t overwhelm yourself with being OCD cleaning and perfect. I do my toilet each Monday takes me 3 min and I do sweep n mop my living Tuesday’s only and if can’t that Tuesday’s maybe I can next day.

I empty my dishwasher then I sit down for 20 min or more then I will load my dishwasher.

I bought paper plates and plastic disposable silverware and even cups. So each day I only basically have to put pots and pans in dishwasher IF I EVEN FELT COOKING THAT Day.

My downsized little home now is just enough for me to pace myself.

And be a delegated (king or queen of your castle) you should do as less as possible so DELEGATE DELEGATE DELEGATE !

Do not stress or overthink what you can’t do.

How about see all what you CAN still do even with pacing yourself.

Laugh a lot at yourself.

Keep faith

Kristina