Wednesday, July 27, 2011

Survey Shows that Fibro Impacts Life Decisions and Everyday Activities - Did I have a plan when I started this post???

Follow up note: July 27, 2011 3:16am  I've just spent several hours going through and doing a copy and paste into Word on the blog to take with me to my SSD hearing at 10:30 this morning.  I found this draft and don't remember starting it but that's really nothing new.  :-)  There were several posts where I promised to follow up and haven't so I've made a list so that can do the updates.  I added this to the list because a cursory glance at the website did show some links to some potential helpful sites.  Stay tuned folks.  I may just figure out where I was going with this post.  LOL 
Ok I have no idea how I highlighted my note and I can't get it off.  Since I would like to go to bed for at least a little while.  I'm going to move on and come back to it.  If you have any suggestions for how I can fix this other than deleting it please help me turn this into a learning experience.


I had planned to post everyday while I was visiting with my grandchildren about how we find activities that Mimi is able to do with them.  As you can tell, that hasn't happened.  I'm not sure how I did it but I'm "pulled" my right thumb.  I can't hold a pen to write and I've not been able to sew because of the pain.  Typing is also painful so before I go to the doctor, I'm trying not using it any more than I have too. The no use theory seems to have helped but I guess the test will be when I get through with this post.

I can't remember where I saw this posted but it was probably on Facebook.  What I do remember is how angry it made me that the NFA and APF had to do a survey to find out what those of us with this hideous disease have known for as long as we've had this mess. Hopefully there wasn't much money spent on the survey. 

Pain Medicine News, The Independent Monthly Newspaper for Pain Management published
Fibromyalgia Survey Shows Impact on Pivotal Life Decisions, Everyday Activities in their July 2011 issue.  The survey found that those of us with fibromyalgia, diagnosed or undiagnosed experience debilitating as a result of our chronic pain condition.  Well, no kidding. The survey looked at the impact that living with a chronic pain condition, such as fibromyalgia, can have on everyday tasks, parenting, relationships and life decisions.
The online survey was completed by 3,018 individuals living with diagnosed or undiagnosed fibromyalgia (n=2,559) or other chronic pain conditions (n=455). The average age of respondents was 51; approximately 91% were female.
Notable survey results include the following:
  • Almost nine in 10 respondents (approximately 87%) felt they are no longer the person they were before they started living with chronic pain.
  • Nearly all respondents (92%) reported their condition has had a significant impact on major life decisions, including whether to initiate or remain in a relationship, change jobs and/or have children.
  • Of the more than 650 respondents who had children currently under the age of 18, 95% reported their pain condition affected at least one of their parenting duties, such as taking care of daily household and child-care needs, enjoying their children’s milestones or managing their children’s activities/scheduling.
  • Approximately seven in 10 survey respondents (68%) agreed that pain limited their ability to care for their family.
  • Approximately 98% of respondents reported they have implemented some type of adaptation to their daily routine in order to conduct activities and tasks; 75% had made three or more daily adjustments.
“It took two long, painful years and countless doctor visits before I was diagnosed with fibromyalgia, but our survey respondents had an even lengthier process—their average time to receive a diagnosis was three years,” said Lynne Matallana, MS, president and founder, NFA. “My diagnosis has allowed me to work toward managing my pain more effectively, so I know firsthand how important it is to receive one. It is our hope that enhanced awareness and education will help shorten this journey for others.”
The survey is part of an educational initiative, “The Faces of Fibromyalgia,” that launched today through the NFA and APF. The survey was developed through collaboration among the NFA, APF and Pfizer Inc

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