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Fibromyalgia Survey


Posted by calande

Hello,

I have fibromyalgia, and I decided to start a project to gather as much information as possible on the desease. I am drafting a survey on the web, and I would like you to contribute reading my draft, giving feedback to my discussion list and ever improving the survey until it asks the right questions and provides the right possible answers.

Once the draft is good enough, patients will be able to answer the survey anonymously. The idea is to provide freely the results of the survey to the community of both patients and scientists. There will be a report on the survey once we have enough people who took the survey, and the database will be available for people who want to perform advanced queries, matching several pieces of information.

My current draft is here: http://fibromyalgia-survey.dreamhosters.com I would appreciate if you could take a look at it, and give me a hand, especially if you are either a patient or a scientist. I appreciate your time. Together we can find out more about FMS.
Thank you,

Charles.

 
Comments (2)
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I would add in your list of therapies herbal and vitamin things such as extra B vitamins, fish oil, etc. I think I would also expand your definition of "sport" to mean actual sports as opposed to massage therapy, yoga, swimming, etc--different kinds of exercise affect the body in different ways, you know?  Best of luck with your survey!

I have Fibromyalgia and have to say after much suffering from about the age of 35, was releaved to find an answer - but ontop of that I have arthritis in my spine.  So my Doctor said I needed to workout - and having been an already active "Young Person" I thought no problem!  I was working out at the gym everyday - I had a trainer show me excerises that would strengthen the muscles in the back without putting strain on my spine.  About 2 months into my workout routine I started having severe chest pains - So in this area I must disagree with the post that says you should included "Actual Sports".  If you do you better caution extreme limitations to those "sports".  The idea of Message Therary, Yoga, Swimming, is to keep the muscles of the body limber, functioning, and healthy.  To much strain on a person with fibromyalgia can cause nerve problems in the muscles just below the breast bone - resulting in the worst most scary "Heart Attack" pain ever!  Its not an absolute but it can happen....and believe me, it is not fun experiencing that pain - its horrifying and it doesn't just stop it comes and goes for a long period of time.

Swimming - Yoga - Regular Massages - walking (not rapid) - are the correct and exact sports (and yes they are sports - does the name Michael Phelps ring any bells) for a person with Fibromyalgia to participate in on a regular but not excesive basis.

Good Luck with your research...maybe you will find something that can help us all!

 

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