Fibromyalgia Awareness Day 2009

Posted May 13th, 2009 by

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.

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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 life. In fact, in a recent survey amongst some of our members with fibromyalgia, 85% of our respondents agreed or strongly agreed with the statement – “I feel better about myself because of the recognition by others at PatientsLikeMe that my condition is real.”

If you are not already sharing and learning with other patients like you, we invite you to join our community here at PatientsLikeMe.

PatientsLikeMe member moakes


6 Comments

  1. I was diagnosed with fibromyalgia more than two years ago.I submitted an article on living with fibromyalgia and ask for anyone that has the illness to call and maybe we can start a support group.Several calls were received, but one person took hold of the group with me.Robin and I meet several times before our first minute.We advertise FibroFriends
    a place to meet others who know what you’re going through.Our support group had 34 people for the first meeting held on April 23, 2009. We will meet once a month on the 4th Thursday. FibroFriends r.u.n. Pain? slogan are printed on the front of our tee shirts with Fibromyalgia Awareness Day is May 12 printed on the back of our tee shirt. We celebrated May 12 with 14 people at a luncheon and bringing fibromyalgia awareness to the community.

  2. I am so glad to hear another community on this amazing site is up and flying. I think not only will I be a regular on Parkinson’s and that shall always be home , but I must also expand my horizons in hope of making a connection and getting some relief from unrelenting symptoms that cross from one disease to the next. When I joined the PD community we had 267 profiled members with maybe on a good day 20 posting…..look at us now over 3000. In just two years we have brought awareness so far, not only among ourselves but in the medical community…Keep up the good work “Fibro” the key is one on one spreading the word…..love pokie

  3. hi .. i recently {oct08} had a partical {right} kidney removed due to a henatica retnal cyst thougth to be cancer . since the surg. i have been told i have fibromyalgia .. also had a round of shingles. due to nerve damage frm the surg on my kidney.. im currently on ultram. i get the nerve blocks im also on Lycia. all the medications and such that were listed on the page im on. and seem to be working.the pain.. memory loss. tireness. are better until its going to rain.. then I can tell you about how much rain we re going to get.. lol.
    this is a great site you have started i dont have time to go into my experience but i can say .. they need to come up with a NEW something or other.. way to ck for CANCER in the kidney.. without the EXTREME measures of taking out the kidney n it NOT cancer.. the lasting damage frm that surg is unreal.i went to IUCANCER center thinking wow. this is the best I CAN GET in medical.. boy was I WRONG there. dr operated on me.. i was on life support for hours.. n the dr jumped on a plane and went to NEW YORK for a family party..i live in indiana.anyway.. keep the site going n i ll ck in later. good job.. nice to know what other people are going thur n nice they share

  4. What are the 18 tender points for fibromalgia?

  5. I have had Fibromyalgia for 2 years due stress at work. I tried Cymbalta, it didn’t work that well for me. I started Wellbutrin for depression 2 weeks ago, and gives you a fuzzy head. Yes I forget things alot. I am on a pain killer also and sleeping pills too. I hoping one day this all goes away. Most people think you are nuts that it is all in your head, but they have no clue. I am so tired all the time plus I work 2 jobs so I am never refreshed I am always yawning. I hoping if I get a differnt job that this Ilness goes way. I like share my information with other people so I can try to help them out.

  6. Hi Connie, you can find out more about the 18 tender points for fibromyalgia here: http://www.webmd.com/fibromyalgia/guide/fibromyalgia-tender-points-trigger-points?page=2

    A rheumatologist with experience in diagnosing fibromyalgia can use a dolorimeter on those specific points to assess whether you have tender points or not.

    All the best,

    Paul Wicks

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