been there and joined but I find the format difficult to follow. I'll stay with DS.

How can one find it Norma? what is the name if it? Can you post a link?

Heather, when you go to FB search PKD, there are only a few so it shouldn't be hard to figure out which one.

Yes, I will stay with DS as well, it appears to be a lot of pretty young people, which leaves me out but it is a lot of good information for people just starting out with their PKD journey.

Helen, what is difficult to follow on FB? It flows right along with questions, answers and support! I do read them, but don't reply and I am shocked at the amount of people with PKD that up have arthritis as well! That in itself causes so much pain and they are getting docs to prescribe pain meds as we can't take anti-inflammatories! It's a different world out there. We are getting screwed by inadequate docs!!! I have been suffering for years with arthritis and am just about at the end of my rope!!!! There is help out there, read them yourself and see!!! We are talking about thousands of people in this group, there is much to be learned! After reading today's postings, I am going to raise a little hell!! I am tired of being treated like a child that doesn't know the pain from PKD and arthritis!! Really tired of it all! My NP better be ready for me next week and give me some help, as I am not going to live in this pain anymore!!!

Hi Norma,

I hope you have some joy next week. My father (no PKD but a history if stomach ulcer) is really struggling with the pain and restrictions of arthritis and cervical stenosis. He didn't cope well with codeine so now just has paracetemol (tylenol) which isn't really up to the job. I can see him becoming quite disabled with this. Let us know how things go with the doctor.

Chewitt

Norma, besides the PKD FB group I joined one for ovarian cancer and am amazed at the support.
still I like this group, tho we don't get the feedback we should. too many people ask questions but never offer advice or share their experiences so others can benefit.
on FB they choose what THEY consider "top stories" unless you opt for most recent. something many have complained about but FB doesn't listen or seem to care.

Helen, where on earth did you ever get such an idea? FB doesn't "choose" what postings they are going to publish! Where did you get that idea??? Show me!

Norma, you misunderstood what I said. I said FB chooses what they consider "top stories". when you go on you have to go to News feed and ask for most recent, otherwise you get what FB decides is "top stories". there is no way to get most recent as the default.

I am getting all the most recent stories.

Well, I sure can't seem to find a PKD forum with much action on Facebook. I have tried for years.

Aha! I think that the one I joined years back, I just never see the posts because as Helen says, FB chooses what posts they want you to see. Phffffbbbbttttt!

Spiderwoman, incorrect about Facebook.
I am an administrator on a Facebook group called
"PKD (POLYCYSTIC KIDNEY DISEASE) "CYSTERHOOD"

There are over 2500 members. From around the world.

It's actually easier to use than this site.

There are also several other pages about dialysis, transplant, and The PKD Foundation, The National Kidney Foundation, etc, etc.

The posts on the group are private.

Check out
https://www.facebook.com/groups/PKDCYSTERHOOD/

I'll be there! :)

whats the name of the group on face book ?

easy to find. just look for polycystic kidney disease. there are only about 3 listed.

I have joined LIVING WITH POLYCYSTIC DISEASE SUPPORT GROUP on Facebook. Its very helpful. Responses also seem to come a little quicker, I think because of the Notification feature on Facebook. The more support groups, the better right?