Good Fibro Forum

Anything on your mind that isn't about RLS? It's nice to realize that there is life beyond this disease and have an opportunity to get to know our online family in a different context.
Post Reply
ViewsAskew
Moderator
Posts: 16571
Joined: Thu Oct 28, 2004 6:37 am
Location: Los Angeles

Good Fibro Forum

Post by ViewsAskew »

I have a dear friend who's suffering from fibro. It's hit him very hard and he's had to retire. This weekend we were supposed to present together at a conference and he had to back out because he's in a major flare.

The prior weekend I'd mentioned that this forum was such a wonderful one. He said he'd tried a forum and all he got were whiny people who tried to one-up each other on how bad their symptoms were. he said that there would be posts of things like, "Lyrica Sux" followed by "Lyrica Rocks" and no one really substantiating what happened or how it affected them.

He's the type who's looking for concrete ideas, not sympathy or even empathy. He wants to know new research, new meds, the things people try and why they do or don't work, etc.

I think he's looking for a forum much like ours, but for fibro.

If anyone has any ideas, please let me know.
Ann - Take what you need, leave the rest

Managing Your RLS

Opinions presented by Discussion Board Moderators are personal in nature and do not, in any way, represent the opinion of the RLS Foundation, and are not medical advice.

SquirmingSusan
Posts: 3028
Joined: Sun Nov 12, 2006 4:08 am
Location: Minnesota
Contact:

Post by SquirmingSusan »

http://www.butyoudontlooksick.com

I haven't been there in a while, but it used to be a good place.
Susan

rlsfirefly
Posts: 19
Joined: Thu Oct 07, 2010 6:15 am

Question

Post by rlsfirefly »

Does your friend have RlS also? Is there any link between RLS and fibro? I hear lots of people who have fibro also have RLS and the other way around. Have there been any studies done?

As for discussion boards about fibro, I posted in the "new" posts about problems with other boards. Sometimes I think you just need to look on other boards and pick out 2-3 people who sound half-way intelligent and just start up an email conversation.

ViewsAskew
Moderator
Posts: 16571
Joined: Thu Oct 28, 2004 6:37 am
Location: Los Angeles

Post by ViewsAskew »

No link between them that I know of and no, my friend doesn't have RLS. He just has a very low tolerance for what many of us would consider bonding, lol. He's a factual guy, very left brained. He goes to forums and sees people venting and he's out of there, lol. He just wants to hear about new theories, new treatments, stuff like that, not to share in an emotional way.
Ann - Take what you need, leave the rest

Managing Your RLS

Opinions presented by Discussion Board Moderators are personal in nature and do not, in any way, represent the opinion of the RLS Foundation, and are not medical advice.

Post Reply