Fibromyalgia

Sharing Is A Right As Well

10 Comments / ALS, Fibromyalgia, HIV/AIDS, Mental Health, Multiple Sclerosis, Parkinson's Disease, Patient Experiences, Rare Diseases, Research / By

We do not live our lives alone. We live our lives in collaboration with others. We communicate our needs and our goals, and together we work to achieve them. This is exceptionally true for families and individuals dealing with illness. Whether you’re dealing with depression, or pain, or perhaps the fear and stigma of HIV, or the impairment that comes from MS, Parkinson’s or ALS, what helps us the most is when those around us reach out and share their support and advice. You would think that your ability to share would be as much your right as speech, but is it? It’s not clear that is true in healthcare today, nor is it clear that such a right will be protected tomorrow. Privacy is also a right – a right to not share what you do not want shared. It’s a fair and just expectation that the doctors and clinicians you employ to support you in your illness will not share your information without your permission. Today, I fear that privacy has become much more than a right; it has become a goal. When that happens, people begin to find ways to make it difficult to share in the …

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Fibromyalgia Awareness Day 2009

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Did you know that yesterday was Fibromyalgia Awareness Day? The PatientsLikeMe Fibromyalgia community is growing exponentially with more than 3400+ members just five months after its launch!  Many  of our members are feeling newly empowered by their membership in our community and are attending events, wearing pins and ribbons and taking the time to spread awareness about what it’s like to live with fibromyalgia. This sharing mirrors the sharing they do on the site. At PatientsLikeMe, members build their profiles by sharing information about their condition, such as symptoms and treatments.  Top treatments cited to date include rest, heating pads, walking, stretching and the drug Lyrica.  The most commonly listed symptom is pain, followed by fatigue, memory problems and lower back pain.  In addition to sharing health information, patient members also share their personal experiences and tips with each other.  In our forum these past few months, patients have discussed all kinds of topics, including finding the right doctor, coping with pain and fatigue and how to explain how they really feel to their friends and family. With all this sharing, patients are learning more about themselves, helping each other better understand this condition, and improving their overall quality of …

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Patients Like Me Can Run 13.1 Miles With Fibromyalgia

Fibromyalgia / By

13.1 grueling miles.  A half marathon.  Running that distance for anyone is a challenge that takes months of training and dedication.  Imagine running that distance having fibromyalgia. My close friend and PatientsLikeMe member, Minnie Lee, has fibromyalgia and courageously ran in the Surf City Half Marathon last Sunday.  This wasn’t even her first time running it.  She has dedicated herself to running and finishing half marathons and triathlons despite her disease.  Pain or no pain, Minnie finishes. PatientsLikeMe was there to sponsor and encourage Minnie to achieve her goal:  finish in under 3 hours.  “I run because so many people can’t,” says Minnie breathlessly through tears after crossing the finish line.  Supported by close friends Shirley Huang and Lilian Tham, Minnie finished strong despite the pain. Yes, Patients Like Minnie can run 13.1 miles! For more inspirational videos from our fibromyalgia community, visit www.youtube.com/PatientsLikeMeFibro.

Voices of Fibromyalgia: Patient Video

1 Comment / Fibromyalgia / By

As we end the year, we give you the last 2008 video from PatientsLikeMe and the first of our new fibromyalgia community.  We asked this newly launched community to tell us “How are you overcoming fibromyalgia?”  This is what they had to say: Thanks to all of you who contributed your “voice” to this video.   It’s truly a reflection of patients helping patients live better every day.  We look forward to hearing more voices in 2009! Happy New Year!

Voices of Fibromyalgia: Q&A with Minnie Lee

3 Comments / Fibromyalgia, Patient Experiences / By

PatientsLikeMe’s David S. Williams sits down with well-known blogger, triathlete and fibromyalgia patient, Minnie Lee.   Lee, an early member of our new fibromylagia community which launched this week, has a public profile on the site. *** (David) When were you diagnosed with fibromyalgia and when were your first symptoms? (Minnie) I was diagnosed in late 2002.  However, my first symptoms started as early as 1998, and then became more prevalent and frequent in late 2000. (David) How has fibromyalgia changed your life? (Minnie) On its onset, the changes were negative.   I couldn’t engage in my usual social activities and I was getting sick more often than I was used to.  It was a shock to me, having always been such a healthy person all my life.  I limited myself even further using my “strangely named illness” as a crutch, which led me to be even more dormant.  That was early on.However, in the past 2-3 years, I have to say that fibromyalgia changed my life for the better.  It has given me purpose in life – to improve my own life and help others improve theirs by example of exercise, healthy eating and proper treatments.That said, while I still manage …

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CBS Evening News, BusinessWeek, Fibromyalgia: Oh, Just Your Typical Friday

5 Comments / ALS, Fibromyalgia / By

It’s exciting times for PatientsLikeMe! Today, our new community for people with fibromyalgia goes live on our site.  Spread the word!  Let’s bring a new level of understanding to this disease in a way that nobody else can.  Next week: a blog series regarding this new community and the people in it. If you haven’t checked out the most recent issue of BusinessWeek yet, you’re in for a treat. Senior writer Catherine Arnst takes an in-depth look at how PatientsLikeMe is “changing the nature of drug research and the practice of medicine” in her article –  “Health 2.0:  Patients As Partners.” Finally, turn your channel to CBS Evening News with Katie Couric tonight to see PatientsLikeMe featured in a segment with medical correspondent Dr. Sanjay Gupta.  Part of a week-long series about patients finding medical information online, our piece will include interviews with a patient member, as well as our founders. We have lots happening, and lots more to come!  Stay tuned…literally.

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