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 didn’t know much about fibromyalgia before I was diagnosed. I can’t say I’m an expert now either. But the information has helped me better communicate with my doctor.
3. As a wife, mother and grandmother, how has fibromyalgia affected your family?
People ask my husband all the time how I am doing. He will tell them that I have good days and bad days, and we have learned to take each day as it comes. When I told my children, they were concerned. My daughter is a research junkie, and she looked it up and explained to her brother what I have. His response was, “That explains a lot.” Since I don’t get to see my children and grandchildren on a daily basis, I just deal with fibromyalgia and play with my grandchildren.
4. What’s the most important thing you’ve learned from other patients?
I have learned that I am not alone in this.