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Thursday, September 2, 2010

Bits and Pieces About Fibromyalgia

An example of a breaking news intro graphicImage via Wikipedia
I signed up for Google Alerts on fibromyalgia news just to keep up-to-date on breaking developments. It's lead to some pretty interesting discoveries in the past few weeks and I wanted to share three of them here with you.

New Diagnostic Criteria

While I agree that the criteria used to diagnose someone with fibromyalgia could be improved, I am not sure that the latest effort from the American College of Rheumatology represent a step forward in this process. But rather than take my word for it, head over the the Fibromyalgia Network website, read the article Patients Weigh In on the New Diagnostic Criteria and click the link at the bottom of the page to Take the Survey. The survey takes you through the process of completing the new assessment form and gives you an opportunity to 1) leave feedback and 2) download a PDF document of the new criteria you can share with your doctor.

Yes, according to the new scale I still have fibromyalgia, but the questionnaire didn't included queries about all my symptoms. Plus I think it overlooked certain parts of my body affected by fibromyalgia.

It's Not Looking Good for Xyrem

The FDA discussed Xyrem about two weeks ago and the review panel expressed some concerns about safety. The panel members worried that the approval of Xyrem for the treatment of pain and sleep disorders in fibromyalgia might lead to the drug being used inappropriately. After all, Xyrem is a prescription version of the date rape drug GHB.

Interestingly, their concerns and my concerns are not the same. As I have discussed before in Xyrem: How Does This Make Sense?, I worry about being paralyzed in bed and unable to respond to an emergency like a fire or earthquake. I still think this treatment for fibromyalgia is akin to hitting a nail with a boulder--the whole approach seems like overkill.

Plus I found an interesting article from Devin Starlanyl about her experiences with Xyrem that points out some unexpected side effects.

News to Me

Finally, this most likely qualifies as old news, but the information was new to me.

Researchers found
using PET scans that the pain receptors in the brains of people with fibromyalgia appear occupied. These receptors being "in use" provides a scientific explanation for why pain medications are of little help to people living with fibromyalgia. Much like not being able to park a car in a space that is already occupied, pain drugs can't help if the targeted brain receptors aren't available.

What interesting news have your heard recently about fibromyalgia? Share it here with us in your comment.


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2 comments

Young Wife said...

Very interesting. Thanks for sharing. My husband has Psoriatic Arthritis, and his rheumatologist is questioning whether my husband might also have fibromyalgia.

Tammy said...

I had actually followed Guaifenisen treatment plan with Devin Starlanyl. I took 800mg of Gua a day twice a day. Unfortunately the only thing it did for me was dry up my lungs when I had bronchitis or pnuemonia. Arg. Pet scan... I had one done years agao and did in fact solicited the quote "your brain is busier than worker ants"... so there you go. Hugs. Tammy