Continuation of Online Social Networking for Fibromyalgia Support and Information.
In my previous post I listed the main social networking sites available if you are looking to to join an online community for support, encouragement, camaraderie, or just to have a place to vent. My inspiration for putting these posts together is to help alleviate the potential for isolation if you are living with Fibromyalgia or most any chronic illness. For this post I am going to focus on the many online forums and support groups available. Again, this is just a partial list of what is out there, so feel free to leave recommendations in the comments if you know of a forum or support group I did not cover.
I do not have firsthand knowledge of most of these site, so please note my inclusion of them is not an endorsement, it is for informational purposes. The description after each link is taken from the sites own tag line.
Online Forums/Support Groups
Daily Strength – Free, anonymous support from people just like you
Fibromyalgia Support Form – The Official Fibro-Support Center
Fibro 360 – A community of Hope and Understanding for People suffering from Fibromyalgia
FibroHugs – Support for Fibromyalgia
FibroTalk – Online Community Support
Flickr – Simple Pleasures with Fibromyalgia
Healing Well – On Diseases, Disorders and Chronic Illness
Health Boards – Health Message Boards
Live Journal – Express Yourself, Share Your Life, Connect with Friends Online
MD Junction – people helping people
Patients Like Me – Share your experiences, learn from others, and connect with patients just like you
Pro Health – Commerce with Compassion
UK Fibromyalgia Forum – The new discussion forums for those with Fibromyalgia in the UK
We Are Fibro – The Social Support Network for those Living with Fibromyalgia
WebMD – Better Information. Better Health.
As you can see the options are many. I have spent time on a few of these boards and I can say some were simply too negative for me, while others were full of inspiration and hope. If you make the decision to become involved, take your time to find the community that is best suited for your needs. Do not get discouraged if the first board you try does not suit you. Just come back to this list and pick another. I would love to hear your thoughts and experiences.
Just one more? http://invisibledisabilities.ning.com/
This is a really robust site with forums, chats (with very nice people that sponsor the chats), blogs etc. strictly for people with “invisible illnesses”.
Too be really honest, I haven’t spent much time on it because I found it right as we were selling the house and starting the process of moving. But I’ve been keeping in contact with several people that are on the site. I haven’t met anyone there that isn’t nice…
It is a free site and I don’t understand why they aren’t publicizing it more.
And one more comment…good lord woman! Did you find all those on Twitter?!! Wow! You did your homework.
I love your blog! I have visited a few of those sites. I used to go to Daily Strength for support with tinnitus but there were some fights going on, I could not handle people being mean to each other.
I am so sorry you know so much about fibro. Its so hard for people to understand unless they have it. I keep it quiet usually because so few people in my life support it. They think its an excuse I use. Meanwhile I met a new man and have not told him and am living in fear of an outdoor concert he wants to go to that is STANDING only. I can’t stand up for that long! I want to go but … I can’t do stuff like that anymore.
I better go before i take up all your space….
tks for the effort you put in here I appreciate it!
I have found WebMD to be very light-weight and doesn’t generally offer new stuff.
You didn’t mention About.com, or was that in the first installment. I forget, sorry. Great list, though. I will definitely check out some of the others.
hiya,nice to meet u anna,can i join this group plz,but the thing is it doesnt say how to register with it.
Well, I’ve checked out a couple and I know I will be spending a bit of time on Fibro Talk. Thanks for finding that one for me.
thats ok ann,how u feeling today,im very tired and my knees are killing me today,aching and in pain.
I hope to find some others who are suffering from the “…..but u
don’t LOOK sick” disease! Please write me. I am so down today.
Thanks, Sharon
THANKS…PEOPLE THINK I’M CRAZY OR I’M FAKING MY PAIN OR I LOVE THIS ONE ‘IT’S ALL IN YOUR MIND’.
You are not crazy and it is not all in your head – whether people believe you or not. Fortunately FM is becoming more widely accepted as a legitimate condition. I hope you will soon never experience those responses again!
i came across fibrohaven-new.dev from yahoo, this is a great forum i will be visiting very often.
i’m called George Davis , currently working in the city of Rock Island .glad to know everybody on fibrohaven-new.dev. i will be able to learn a lot from you guys.
I merely wished to officially say “Hi there” to everyone here. In my opinion , that this appears like an unusually appealing place to be online.
I cannot wait to begin. Do you have any sort of guidance for someone in the beginning stages? Any certain section that you would advise more versus others to begin?
I want to to share with you a quote that i have often found to be tremendously motivational in order to start formal introductions:
[quote]Never believe in mirrors or newspapers. ~Tom Stoppard[/quote]
Greetings,
Paul
Hi Everyone,
New to the forum. I’ve recently started up a blog and I’d love to share my story with you. I’ve had a ruff journey like all of you but I’m in a good place now. I wake up each day and kick fibro’s butt. You can do the same
Check out my blog
http://livewithfibromyalgia.blogspot.com/
You will find tips on healthy eating, motivating ideals, my vitamin routine which allows me to function like a normal person, tips for sleeping and so much more.
Thanks for Reading
Deidre
One of the newest forums for people affected by Fibromyalgia is the following forum: http://www.fibromyalgiaforums.org
They have a great facebook presence: http://www.facebook.com/FibromyalgiaForums
Additionally, the entire forum is moderated in order to prevent miracle cure advertisrs, spammers and other undesirables. I highly recommend giving Fibromyalgia Forums a try. You can register here: http://www.fibromyalgiaforums.org/forum/register.php