Chronic Pain

I've seen how others around here are feeling like there is just not enough participation.
I've been trying to participate here and also have my own carecentral page, and a home page for the share post portion of this very large we-site.
I've been spending a few hours here every day, when I first started I only thought that it had personal pain pages for people to start. Then as I snooped more, I realized that every one can participate in the share posts, read all the articles, etc.
I was corresponding with someone that's been participating in share post and I happened to mention that I had not even realized that ther was a forum here. Evedentally this person that had been a member for a long time and creating share post was unaware of the forum.
I think maybe I need to create a share post with links to all the possibilities here and make sure every one is aware of all that is offered at this site.
I really believe that the possibilities for this to be a very active and full forum, carepages, and share posts. This is the only site of it's kind that I've happen to find over the past four years of searching the internet and I think we are all going to have to get the word out and also do some of our own advertising.

1) Is everyone aware that you can have your own carecentral.com page? You can set it up any way you want, you can journal, share your favoite links to info in the net with others, you can invite your family and friends to join your site and they can keep track of how your doing, it even has a portion on the page, where you can put your needs, your invited friends and family can read them and then act accordingly. Here is my page and you can get to the part to create your own page from the link at the top of the page that states "Create your own Page" It's really fun, you can add pictures of yourself and family. Check out mine.http://www.carecentral.com/bettys-pages-on-pain

2) Then in another portion of this site at the ChronicpainConnection.com you can have a home page that you can also share your information, pictures, Create & Send Share Posts and also read many really great share post in several different categories. you can send Private messages and also communicate with other FM & Chronic pain patients in this manner too. Here is my home page, so you can see what you can create for free too.http://www.healthcentral.com/chronic-pain/c/25343/home/

3) Then too as you already know, you can all participate in the forum here.

This community has so very much to offer to every person here. I've done the searching for you, now you can see what else is available and the posibility of creating and sharing with others who are suffering too.

I hope this helps all of you
Betty

HI Betty Boop - good day .. I see you have posted almost everywhere ? it seems ... .. I am grateful to you for that .. you did all the research and helped me to find my way here .. but I do agree, not alot of people in some of the chat rooms .. I see dates going back to 06 , and was wondering why it is that people don't participate more .. you can lead a horse to water, but you know the rest .. most don't get what the site is for , I guess .. they ask afew questions, make a few remarks and then poof ! they are gone ..

Personally, I think they need to clarify all these posts .. yes, we have a sharepost, if peole look .. we have these forums , but slow anmd/or no epsonses .. I can get that from my friends and family .. lol .. anyway, If you ever read this threaed again, I apppreciate your efforts , seems satcy from the MS group is helping some of this chat forum get going .. but people have to be open and and share and have to be involved .. I am not one to say "Bingo" and not share the pot .. then disappear until the next "crisis" arrives, and I know that we are here for each other, but in essence our shareposts are a far better way. I would rather just do my sharepost and if i get responses , then so be it .. here the resonses get lost in between .. and i get a notify each time someone posts a reply , so I can check it out .. but it is a very slow process, and the moderators , should see that more advertising about the chat rooms is necessary, and navigating these threads so we stick to the main topic at hand , is confusing. Some

Some times I just post the same thing in separate forums .. but we'll see , you are doing the best job along with the moderaters of these forums .. thank you Betty .. Adrian

Adrian

I'm really sorry that we could not do a better job in supporting you.
I have been trying for the past couple of months to get something going on here and have been really happy that some others have wanted and taken theri time to participate in the Daily Grind thread.
I think the key word here is "Moderators" There are none. No one is or seems to be incharge of any of this stuff. I'm only a simple member just like you that sees some possiblities to the site and have worked to try and get responses out to some people and let them know that I do care about what's going on with their pain and their life.
I had thought maybe if some began participating in the daily grind that they would venture out onto the forums and start creating some new topics. I think that it's a shame that no one is even interested in people in pain to get some people gathered to take over moderation and also creating conversations, following sharepost and make sure everysingle person who creates a sharepost receives an answer and reply for their effort in reaching out for help.
For some reason, when I first began surfing around this entire site, I found a months worth of people in chronic pain that had posted an initial sharepost and did not get even one reply, it really bothered me and so I started going back over the share post for the past two months trying to make sure everyone received a reply and knew that they were a valued participant here at the chronic pain connection. For a time it was really wonderful and all it took was giving someone one response and others joined in and the person felt more comfortable to share some more about them selves, so I had felt it was helping them in some fashion and I really enjoy trying to help people. We all tend to be so reclusive and so lonely, It bothers me that people are lonely and feeling secluded from even their families.

I've parused the other illnesses here at carecetral and I have to admit that I'm a bit disappointed that they seem to have a great deal of participation with more porfessional involvement too. Sometimes gives the the thought that maybe the medical community really does not care much about those of us in chronci pain, after all, most of us cannot be healed yet so we provide many professionals with nothing to feed the ever present egos and we take so much time & responsibliity to care for us too.

I'm sad that your not going to be around, you added a wonderful smile to our hearts daily, but I also want you to be happy and fulfilled, so fly away my friend and I hope to see you around.
Betty

Hello, I have been gone for many months. First the computer lost all our info/crashed. I couldn't find my way back.

But since my tmj symptoms became second burner with my fibromyalgia, I found two other fibro sites. One has moderate daily traffic and the other you could get lost, but has a LOAD of info.

I do not like this forum layout, hard to get to anything I want. I don't like to fish for stuff.

I do still have jaw issues, so I'm thankful to have found you guys again. I already bookmarked the main page.

I don't see too much traffic around, which makes for not much info. That is what's missing according to me. And it's hard to find/ stumble upon.

I'll be around,
nev

Hi Nev,
Good to see you. Please note that there are also SharePosts (the link to mine is below). This is like a blog or journal. A lot of members find it really fun and helpful.
That is one reason why the forum is not really active- a lot of members post SharePosts and discuss things that way instead.
Hope you are doing well!!
Sincerely,
Stacy

Hello again Nev

I guess I'm one of those annoyingly optimistic ones that feels if we want to have a more active participation in the forum area of this site, then each of us should begin by participating and being as active here as we are able. I know we all are increibly ill & very fatigued people, so I just try the best that I'm able to come by often as I can to contribute something to the site. I'm glad Stacy told you about the sharepostings, as you may really enjoy that portion of the site, there are several discussions and many topics to comment on, that you may enjoy also. There are several people in the sharepost section with TMJ & FM, Stacy really had created some great sharepost articles on TMJ and also those that are of interest to all chronic pain diseases and Karen Richardson does a great job of keeping us all informed on FM issues, studies, results and the hows, whats & why's of FM. So you may want to follow Stacy's link and take a look at all the great shareposts over in that section.
It seems you already know Stacy and also know she has a great deal of knowledge about TMJ. karen Richardson is the Co-Founder of the National Fibromyalgia Association and she too is our resident expert on the FM sharpostings.

I also gave you an invite to our daily on going discussion in the Off Topic section of the main page of this forum called the Daily Grind and you are also welcome to come by and visit with us as much as you feel like.

Take Care, Glad you were able to get your puter up and running again. Welcome again
Betty