Fatigue and Muscle pain

[CazK]

Hi all i got diagnosed with pbc 2 months ago when a routine blood test showed raised liver enzymes. Everything else came back perfect, normal blood pressure, good cholesterol healthy heart and no signs of diabetes or thyroid problems. I was sent to see a consultant and to have an ultrasound where it showed i had pbc and was put on Ursofalk. I am at early stage of a fatty liver.She said i have had it for a while but as i thought the itchiness was part of my Fibromyalgia i did"nt bother going to see the dr about it.I don"t have much itching just now and again and mainly at night when i go to bed. I had my gallbladder removed about 9 yrs ago and had a bacterial infection called H-Pylori early this year (where i was put on 3 different antibiotics 7 day course to cure it ) which my consultant could be a factor in this illness. She said i look so healthy lol. I do get fatigued and achy painful muscles but i put that down to my Fibromyalgia as that can be very painful and debilitating at times. I have been for a second ultrasound today to check the elasticity of my liver and my abdomen and i go for an endoscopy at the end of the month. My question is as i suffer fatigue with Fibromyalgia and fatigue is a symptom of PBC will my fatigue be doubled or just stay the same as what i get now.

[June9961]

Hiya and welcome to the group where you will get all sorts of good advice and empathy. Some of us do suffer with severe fatigue and muscle pain. I don't get the itch so bad but do suffer from what I call broken body syndrome, where every part of my body really hurts, joints, muscles, hair teeth etc. I just listen to my body and rest a while. I also go to bed most nights around six thirty because I feel more comfortable and can cat nap. Don't forget we have the pbcfoundation who can give you invaluable advice. 🙂

[CazK in reply to June9961]

Hi June9961 i must admit i haven"t had a brokenbody syndrome for a while nowi cope withit very well and still live an active life. I just hope i can with PBC as well.

[Leighton56]

I cannot answer with regards to fibromyalgia, I have T2 diabetes, PBC and depression, some days I just sleep. You just learn to listen to your body and rest. As for symptoms being magnified due to having more than one illness with similar side effects I would say yes. Just be kind to yourself on the days you feel totally rubbish.

[CazK in reply to Leighton56]

Hi Leighton56 I have learnt to do that with my Fibro and so far i am doingfineon Urso will see how it goes.

[cazer]

I would be very surprised if yhe fibro didnt actually turn ouy to be the pbc

Fibro is one of those conditions that is given a name only when they think theres nothing else going on... or cant find something else.

They tried telling me i had m.e.to start but then when the blood test showed wierd antibodies they completely forgot that and decided pbc..i expect your itch and fatigue is all pbc..

So chances are nothing will change for you only the name and you may get some improvement from taking urso .

I found they helped my stomach.obviously this is not a medical opinion just what ive gleaned from 18yrs of pbc.good luvk cazer.

[CazK in reply to cazer]

Hi Cazer i have had Fibromyalgia since 1998 and do cope with it very well and still have an active life. I learnt to cope with what i can and cannot do and don"t take any medication for it, i also lost a couple of stones in weight which helps. It affects me more in the cold weather so i keep myself wrapped up and warm also my PBC is not bothering me much since i have been taking Urso. The itching is only slight so i will cope with this as well.

[cazer]

It is strange as if you listed both sets of symptoms for the two conditions they are extremely similar...all you mention ...feeling cold aches pain fatigue overdone it times which i assume is similar to broken body yoi mention where my system goes on strike and can take days weeks to get back to my normal...

It would be interesting to ask consult if all this time youve been suffering from pbc.

The good news is that the way of pacing yourself etc keepimg warm would all be the same for both conditions.

Very interesting...i wonder how many more out there might have pbc when theyve been told its m

e.or simlar but have never had the pbc blood test!!!!

Cheers cazer

[CazK in reply to cazer]

I will ask my consultant when i see her in November it will be good to find out if it is .

[cazer in reply to CazK]

Let us know.x

[teddybear7]

I echo one of the other contributors, I was diagnosed with fibromyalgia at the same time as PBC but after lots of research didn't follow fibromyalgia patterns & just had it removed. From my records after a second opinion. Xx

[CazK in reply to teddybear7]

I had all the sensitive points needed to prove it was Fibro, when i am at my most painful time i can"t even be touched as the pain is excruciating. Thankfully that is not often.

[Hidden]

I had a dx of fibro after my liver gastro said the pains and fatigue I had were not due to ( my ) PBC, as I woke up fatigued, so she sent me to rheumatology where he did the pressure point test and said fibro. Based on that and my sleep patterns.

I never took to much notice about it as I didn't agree I had it and the pains went away after I started Vitamin D, he found I was deficient. . My GP was distinctly off with me when I said I didn't believe I had it, but my pains were not excruciating just bone aches.

[CazK in reply to Hidden]

I can"t put pressure on my muscles i even have to push my sisters cat off my knee if he sits on the wrong part lol. I have learnt to cope with it and will do PBC as well. I have always eaten healthily taken Vitamins and fish oils, Probiotics and Milk Thistle. I drink lots of water and herbal teas and don"t drink much alcohol. I just can"t figure why i got PBC maybe it"s my lack of a gallblader .

[Hidden in reply to CazK]

I never had the hypersensitive pains it must be hard to cope with, I know a friend has this in her hands even hers comes in flares so she has some relief.

Have you spoken to the PBC foundation, they have lots of good advice. There link is at the top of the page.

[CazK in reply to Hidden]

Yes i have they are sending me an info pack out and some people near my area i can talk to .