Myositis - Online Support Group - We are patients affected by myositis, here for your support.

Myositis - Online Support Group

We are patients affected by myositis, here for your support.

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Forum

Working with Myositis

I would love to hear from other community members who are able to work what are some secrets to being able to stay in the game. Continue

Tags: work, myositis, working

Started by Meleah in General Jan 17.

Emotional Stress - I am having a hard time dealing with this! 6 Replies

Hi - I was diagnosed with polymyositis at the end of October, less than a month ago. My doctor has me on disability until the middle of January. I have had rheumatiod arthritis for over 8 years and…Continue

Started by Denise Hribar in General. Last reply by Meleah Jan 17.

How to Create Group and Organize A Meetup in Your City

Since others have subsequently asked about organizing groups and meetups in their area, the moderators and I have decided to create this forum discussion so the community can throw out ideas and…Continue

Started by Ben Munoz in General Dec 19, 2011.

Costochondritis 2 Replies

Anyone else experience this? How often? How do you ease the pain? Thanks!

Started by Crystal B in General. Last reply by Denise Hribar Nov 18, 2011.

Welcome to Myositis Support!

Welcome to MyositisSupport.org! The purpose of our community is for patients (and their families/friends) affected with Myositis can find information, support and friends.

What can you do on MyositisSupport.org?
1. Share your story on "My Page" & personalize it to reflect who you are!
2. Upload pictures & videos easily.
3. Start a new discussion on "Forum" or contribute to existing discussions.
4. Welcome our new members with a comment on their page!

Latest Activity

January 2012 Community Newsletter

MyositisSupport Members, Friends and Family,As we begin a brand new year, envigorated with greater joy and compassion, we renewed our greater commitments to our community. BensFriends grew tremendously in the past three years, and we want to take this moment both to thank you and to make a promise to continue fulfill our mission: to ensure that everyone in the world with a rare disease has a safe place to go and connect with others like them.We’re truly privileged to help you make 2012…See More

Blog post by Ben Munoz yesterday

0 Comments

Scott Orn left a comment for Natalie Bauman

I'm glad you are doing well Natalie! That is fantastic. I hope you like the group. Lot's of great people here. btw - I love Texas!

Jan 18

Natalie Bauman is now a member of Myositis - Online Support Group Jan 18

Welcome Them!

Scott Orn left a comment for Meleah

Berkeley is the best. I grew up in San Ramon and Danville, then went to Berkeley, and now live in SF. I love the Bay Area!

Jan 17

Working with Myositis

I would love to hear from other community members who are able to work what are some secrets to being able to stay in the game. See More

Discussion posted by Meleah Jan 17

0 Comments

Meleah left a comment for Scott Orn

Thanks for the welcome message Scott. I love living in the Berkeley area it's so peaceful!

Jan 17

Meleah replied to Denise Hribar's discussion 'Emotional Stress - I am having a hard time dealing with this!'

I am a teacher as well and my first flare kept me out of work for two years. But I am happy to say i am back teaching and I made it through the first semester. Although it wasn't easy, I made it! You also are entitled…

Jan 17

Scott Orn left a comment for BUFFYK

I'm glad you got the site working for you! Stay warm in PA!

Jan 17

BUFFYK updated their profile Jan 17

Friends and Family of Myositis

Where friends and family meet to share views, insights and stories. See More

Group posted by Rose Andrade Jan 16

0 Comments

Scott Orn left a comment for mishel

Hi Mishel - yeah, I don't see my email address on my page so I'm not sure. Yeah, if you want to leave a comment on my page, you have to click the Reply button or go to my page (or someone else's) and leave the comment. Hope that…

Jan 16

mishel left a comment for Scott Orn

I DON'T SEE IT ON MY PROFILE EITHER. IT SHOWS UP ON MY "-PAGE' THOUGH, SO I'M ASSUMING THAT'S JUST FOR ME TO SEE? ALSO, I DON'T SEE A CHOICE TO CLICK 'REPLY' TO A COMMENT. DO YOU HAVE TO GO TO THE…

Jan 15

Scott Orn left a comment for mishel

I don't see your email address on your profile page, is it still there?

Jan 15

Lorelei Cohen updated their profile Jan 14

Lorelei Cohen replied to Denise Hribar's discussion 'Emotional Stress - I am having a hard time dealing with this!'

Life does get much better as you learn to live within the guidelines that your illness sets out for you. Getting onto a good medication therapy program that works for you will help you to feel better. Also researching and knowing as much as you can…

Jan 14

Scott Orn left a comment for Lorelei Cohen

that would be so wonderful Lorelei! Let us know if we can help you. If you post your pages in the Forum/Discussion, others will be able to find you easier too. :)

Jan 14

Blog Posts

January 2012 Community Newsletter

MyositisSupport Members, Friends and Family,

As we begin a brand new year, envigorated with greater joy and compassion, we renewed our greater commitments to our community. BensFriends grew tremendously in the past three years, and we want to take this moment both to thank you and to make a promise to continue fulfill our mission: to ensure that everyone in the world with a rare disease has a safe place to go and connect with others like them.

We’re truly…

Continue

Posted by Ben Munoz on January 26, 2012 at 10:00am

December 2011 Community Newsletter

MyositisSupport Members, Friends and Family,

We hope this message finds you well with high spirits and inner joy. We’re happy to inform you that our Myositis community continuously been growing. And as always, we’re here to give strength and support.

--------------------------------------------------------------------------------

IN THIS…

Continue

Posted by Ben Munoz on December 20, 2011 at 9:55pm

polymyocitis

Hey guys is there anyone out there who has developed interstitial lung disease with polymyocitis/dermatmyocitis? my lung dr keeps warning me about it and doing pulmonary funtion tests....from all the googling ive done, once you get it most folks only live 3-5 yrs....pretty scary,very concerning since im only 55 alone (i have kids-but no husband) to try to deal with this all alone.....

Posted by wendy krauss on June 28, 2011 at 2:48pm

An Introduction to Bensfriends.org

We have some important information we are happy to announce!

As you all know we run support networks for people affected who have a…

Continue

Posted by michael Jones on July 16, 2010 at 12:01am

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