Pbc wendy

[wenava]

Hi I have been diagnosed with pbc over 7yrs ago. I feel quite lonely as family don't understand how you feel. I feel like i am getting more tired and pains everyday.

[Ktltel]

Have you had a recent check up? If not, may be a good idea to get a current baseline and go from there. Run off some current information about PBC, the stages, the symptoms, and get copies handed out to your family members and friends. ❤

Hope you get some relief soon.

Stella

[teddybear7]

I don't think we can expect families to understand when they're even some medical professionals who are not totally on the ball too. Join the PBC foundation, they have leaflets for you free to help & great advice at the end of the phone to deal with this. Xx

[LindyRich]

I agree with Teddybear7. Join the PBC Foundation. The better informed you are the easier it will be for you to help your family to understand. The information they give you is up to date and easy to understand. I gave my closest family the leaflets mentioned. That helped.

Do you get regular checks? Are you on Urso?

Best wishes

[butterflyEi]

Hi wenava

sorry to read you are getting more tired and pains. Are you able to do any light exercise?

The others have already suggested you get information from the PBC Foundation to hand to family which is a great idea. Unfortunately when you tell people you are worn out they are unable to understand the concept of total fatigue and suggest that everyone gets a bit tired. Those sorts of comments are not helpful but they are understandable.

I have recently taken part in the webinars by the PBC Foundation and from knowledge gained I am using You Tube on my mobile to listen to visualization and meditation techniques - I am sleeping better and feel calmer so for me these have been very beneficial, perhaps such a thing would work for you.

When you get yourself checked over by your doctor see if you can get a vitamin D and B12 blood test done as well. Sometimes those with PBC can be low in vitamins A D E K and the specialist I see has suggested to me a multi vitamin including A D E & K would be good.

Never feel lonely we are all in this together and we are a good bunch of listeners.

If you feel that you need to talk to someone then the PBC Foundation has a help line details of which can be found on their web site (it is free to join through the logo above)

best wishes to you

[Hidden]

I've also been diagnosed 7 years, i recently felt I was progressing and became depressed, but turns out that was not the case, after getting a second opinion and speaking to the PBC foundation Iam feeling positive again and have started exercising and diet to loose those few extra pounds I gained over winter

Iam also armed with some bear facts magazines and leaflets to give to the doctors 'yes I did say doctors its not a typing error' there the ones who seemed to cause my frustration and confusion. Iam sure the foundation would be able to offer some help or perhaps family members could read the web site its very informative.