fibromyalgia community

Let’s make fibromyalgia visible today

“I get so angry when friends come over to visit, after I haven’t been able to get out of the house for a month, and tell me how good I look. Or the idiots who ask you how you got the handicapped parking tag when you look so healthy. People just don’t see how difficult this disease is.” -PatientsLikeMe member living with fibromyalgia “I am so tired of the ‘but you don’t look sick’ comments.” -PatientsLikeMe member with fibromyalgia “I feel like I shouldn’t talk about it because I don’t expect it will make a positive impact on me if I do.” -PatientsLikeMe member with fibromyalgia This is the reality for those living with fibromyalgia – and since May 12 is Fibromyalgia Awareness Day, the fibro community is rallying to make this condition visible. The National Fibromyalgia Association has reported that it is one of the most common chronic pain conditions in the United States, affecting an estimated 10 million adults, with around 75%-90% of the people living with fibromyalgia being women. Because fibromyalgia is an invisible illness, explaining it to others can be even more difficult. That’s why 2015-2016 Team of Advisors member Craig (woofhound), who is living with …

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A Good Surprise: An Interview with Fibromyalgia Member DarkAuburn

Did you know we now have more than 30,000 members in our fibromyalgia community?  In honor of this major milestone, we decided to interview DarkAuburn, who joined in 2009.  She’s a three-star member, which means she’s earned our top star rating for sharing complete, in-depth information about her fibromyalgia symptoms, treatments, quality of life and much more.  In addition, she has opted for a public profile, which means that anyone on the Internet (whether a PatientsLikeMe member or not) can learn from her detailed condition history.  Check out our interview with this veteran member below. 1. Tell us a little about the PatientsLikeMe fibromyalgia community. I was not expecting much when I found the site. I thought it would be more of an informational, non-involvement sort of site. I was surprised, as in a good surprise. I don’t know many people where I live that have fibromyalgia, and I didn’t realize how welcoming this site would be. I found people who, like me, wanted answers. The sharing of information and support was a nice thing to find. 2. What’s it like to have access to the experiences and data of tens of thousands of other fibromyalgia patients? It’s staggering. I …

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Fibromyalgia Awareness Day Is This Saturday

Sponsored by the National Fibromyalgia & Chronic Pain Association (NFMCPA), Fibromyalgia Awareness Day (Saturday, May 12th) is an annual event dedicated to raising awareness of this complex chronic pain disorder.   Fibromyalgia (FM) affects an estimated 10 million people in the US, 75-90 percent of whom are women—but it can also occur in men and children. The 2012 theme for Fibromyalgia Awareness Day is “Make Fibromyalgia Visible.”  There are several ways you can help do this: Join a Walk to CURE FM event (Logan, UT, or Philadelphia, PA). Sign the “Pledge to Care” as a caregiver, friend or provider. Sponsor a “Light of Hope” candle in honor of a loved one with FM. Add your photo to the NFMCPA’s Faces of Courage Wall. Sign this Change.org petition started by a PatientsLikeMe member. You can also take a moment to brush up on this often-misunderstood condition, which is characterized by pain or aching in the muscles (myalgia) and multiple points of tenderness (trigger points).  With more than 23,000 patients, the fibromyalgia community at PatientsLikeMe is a great place to gain knowledge.  Some of the most commonly reported symptoms in our community include muscle and joint pain, brain fog, pain in the lower back …

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Treat Us Right: Comparing Cymbalta and Lyrica in the Fibromyalgia Community

Since its launch in November 2008, our PatientsLikeMe Fibromyalgia Community has served as a place for more than 11,000 fibromyalgia patients to share with, find, and learn from others.  Over the past 2 years, thousands of you have reported using Pfizer’s Lyrica® and Eli Lilly’s Cymbalta® as prescribed treatments for your fibromyalgia. PatientsLikeMe recently analyzed the experiences you’ve shared in our Fibromyalgia Community about Lyrica and Cymbalta.  Here are three key insights we learned: Many of you experience little efficacy from either treatment. More than 40% of Lyrica patients and 50% of Cymbalta patients on our site perceive slight to no efficacy or simply cannot tell.  By comparison, only 20% of Lyrica patients and 15% of Cymbalta patients on our site perceive major efficacy. Those of you using Cymbalta experience fewer side effects than those of you using Lyrica. 26% of Cymbalta patients on our site report no side effects, versus 16% for Lyrica. Additionally, 29% of Lyrica patients on our site report severe side effects, versus 19% for Cymbalta. It is not surprising that more Lyrica patients than Cymbalta patients discontinue treatment and do so more quickly. Many of you attribute weight gain to Lyrica. In fact, of all …

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One for All: Interview with Babsie (Fibromyalgia Community Welcomer)

To close out this week’s blog series (“One for All”), we bring you an interview with another noted “welcomer” from our Fibromyalgia community.  Meet Babsie.  A member of the 19,000-member community, she has commented on hundreds of patient profiles to date (which is highlighted in a graphic on Jeff Cole’s earlier blog here).   Read on to hear what Babsie has to say about why she joined the Fibromyalgia welcome wagon and what keeps her going. (Liz) Yesterday, we heard from MS community member, Diamondlil58, about her experiences welcoming members.  Why did you start welcoming people to the Fibromyalgia community? (Babsie) Someone welcomed me, and it made me feel good.  I never saw them on the forum, so after a few months I was curious and seeing the new patients without any subscribers or comments I would subscribe and make a comment. (Liz) What type of responses do you get from people you welcome?  (Babsie) Always favorable and kind.  Some prayed for me and others became friends outside of PatientsLikeMe. (Liz) Do you keep in touch with people you welcome? (Babsie) Yes, in the forum; it is easier so I encourage people to post there. I monitor the Patients Tab …

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One for All: The PatientsLikeMe “Welcome Wagon”

In yesterday’s post, we looked at some of the ways members of the PatientsLikeMe community are connecting with other patients and the value they are getting from it.  Today, we’ll highlight how one person can make an enormous difference and inspire you with her ability to connect with others. One method of reaching out to another member on PatientsLikeMe is by leaving a comment on their profile page.  Often, you exchange comments to inquire about specific data on someone’s profile or to thank them for sharing.  However, one of the most common uses of the comments functionality is for existing members to welcome new members to the community.  This is has been affectionately coined the “Welcome Wagon,” and it is most prominent in our MS community.  Today, more than 71% of members in that community get a comment within the first 2 days.  Receiving a comment from a veteran PatientsLikeMe member when you first join the site is a great way to “welcome” you aboard and make you feel a part of the community. A large part of the effectiveness of the MS Welcome Wagon can be attributed to a member named Diamondlil58.  Of the 150,000 comments that have been …

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Share and Compare: From the mouths of patients

As we round out our “Share and Compare” week, here are a few quotes that some of our members have shared regarding the impact of being able to see where you fit in. You’ll read in the quotes how patients like you can find solace in the fact that there are others out there experiencing the same thing;  you’ll see how your sharing is helping others make sense of their treatment dosages; and you’ll feel through these quotes how personal sharing can be within a community like ours.  Behind all the graphs and charts we’ve shared this week are people – here’s what they have to say. Stay tuned next week for a few follow-up pieces on Share and Compare, as well as a new topic series.  Have you learned from sharing and comparing?  Add a comment below, post in the forum or connect with us through private message inside the site. – – – “It’s so nice to share information with others who are experiencing the same thing. The most frustrating thing I remember as a teenager was when doctors couldn’t explain exactly what was happening to me or why. I used to feel as if I did something wrong and …

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