Friday, September 16, 2011

The Changing Face of Fibromyalgia

When I first got the diagnosis of Fibromyalgia the doc gave me a brochure with some info and, of course, I went online to see what the Mayo Disease info site had to say on the matter. Because it is a syndrome and there isn't much of an understanding about what happens to cause it I was pretty much thinking that not much was understood about it at all. Not to mention everyone I told pretty much said the same thing, "Oh, that's one of those things they say when they don't know what's happening to you." ARG!

Couldn't be further from the truth. They still may not understand why this happens to some people but there is a lot that they do understand about the condition. With ongoing research the face of Fibromyalgia is certainly changing. Here's what I learned.

1, Myth: Fibromyalgia is more common in women. Fact: Just as many men suffer from Fibromyalgia as women, they simply present slightly differently than women do. Much like docs used to think heart disease was more of a man's disease until they recognized that it just looks different with women.

2. In order to catch both men and women with an accurate diagnosis the ACR put forth a new diagnostic criteria in 2010 that includes: widespread pain index (past week); symptom severity (past week); depression, headache and/or abdominal pain or cramping in the past 6 months;  and symptoms present at a similar level for at least 3 months.

3. A study was done to look at the level of some neurochemicals present in people with Fibromyalgia compared to those without and it was found that Substance P was 3 times higher in those with Fibro. Other neurochemical imbalances were also present.

4. The presence of Central Sensitizations Sensitivities leads to the heightening of sensitivities to light, sound, touch, smells, foods, medications and such. This CSS is thought to help keep us on a path of continued fight of flight response, which keeps us in this cycle of pain and fatigue.

There was a lot of science and facts presented but I don't want to bore you all with all of the details but that was a short list of what I thought was most interesting and I felt like helped me most understand how real everything is that I've been experiencing.


  1. It's good to know that some doctors are still researching Fibromyalgia, and see it as a real condition. The more they know the better off we will be. It surprises me that so many still don't believe it's real.

    Do you have any insights on how to break the pain cycle, and keep the illness at bay?

  2. It is amazing how much they have learned about Fibro in the last few years. I hope it continues. I get a headache everday from it. It never ends but I can ignore it at times when it isn't super bad. I have a harder time dealing with the fatigue that it causes. I do hope that you will find what will work best for you!


  3. Did your doctor put you on any medications???

    I had one rheumatologist suggest I had fibromyalgia...then he recanted that diagnosis when my RF was positive and I presented with pleural and pericardial effusions...then he gave me the diagnosis of Undifferentiated Tissue Disease.

    My current rheumatologist is of the opinion that Fibro does not exist.

    I really don't know how I personally feel. I do like a definitive answer with a test that would give me a definitive diagnosis...but I know my symptoms are real regardless of what it actually is.

  4. Della, they gave us lots of great ideas about that. I'll post about it soon.

    Heather, yeah hopefully the research will continue.

    Thanks Joy!

    Jessica, I was put on Cymbalta. How frustrating to have docs changing their mind all the time about what's going on with you. No doubt your symptoms are real - now if we could only understand and control them, right? I sure hope you are able to get some real relief soon. You sure deserve it.