Well, this kind of took me by surprise.
It seems that while I was watching Grey’s Anatomy and Lost finales, and before that getting laid off and starting a new business, the American College of Rheumatology came up with alternate diagnostic criteria for fibromyalgia diagnosis.
Tender Points Versus the New Criteria
Up until now, the main criteria was the direct “tender point” palpation test, where if you experienced pain in 11 or more out of 18 specific tender points, plus widespread pain for at least three months, then you won the fluffy pink stuffed rabbit.
Now, it seems, the ACR has proposed an alternative diagnostic methodology. The new method consists of a multi-part inquiry into pain and other symptoms over the past week, in addition to the usual “for at least three months” and “nothing else explains your symptoms” requirements.
There are basically two sets of scores — the WPI and the SS. The WPI (Widespread Pain Index) is based on nineteen separate body areas (upper left arm, lower right leg, lower back, etc.) and your experience of pain in those areas over the prior week. The total number of these areas in which you’ve experienced pain is your WPI score.
Next, the inquiry looks at your Symptom Severity (SS) score. This is a range from 0 to 12, and is calculated by your assessment of the severity of your fatigue, waking unrefreshed, and cognitive impairment symptoms, plus how many other symptoms out of a prescribed list you’ve experienced. The diagnosis looks at both sets of scores – you need a certain score on both matrices in order to receive the FM diagnosis.
Potential Impact of New Fibromyalgia Criteria
FMNetwork has a somewhat critical take on the new methodology along with a fairly short survey you can take to see if you would fit the new diagnostic criteria. It took me about ten minutes to complete, is confidential (no identifying information other than age and gender are required), and gives you a much clearer idea of what the new criteria are all about than simply reading a blog post. The link to the survey is at the bottom of the FMNetwork post linked to earlier in this paragraph.
There is also a PDF copy of the survey you can print out and take with you to your doctor.
So what’s your take on the new criteria? I understand the skepticism voiced in the FMNetwork blog post — that this might dilute the “meaning” of fibromyalgia, that it could lead to more diagnosed cases which could further undermine credibility … I have to disagree.
It seems to me that we’re no longer simply talking about pain when we discuss diagnoses, but the entire range of all of our symptoms. I don’t see how that can be anything other than a positive development. Pain is always a subjective topic — your “2 on a scale of 1 to 10” might feel like my “8,” for all we know — and that’s one reason, I think, why it’s always subject to such skepticism from others. But when we’re talking about things like (sorry) diarrhea and constipation, blurred vision, bladder problems, cognitive difficulties … this paints a far more accurate picture of what it means to have FM.
Of course, it’s far too early to make any grand pronouncements on this topic right now. It’ll take medical providers using the new criteria for some extended period of time before we can say with certainty what effect it will have.
Grateful hat-tip to Deanna’s Blog for the head’s up on this.
I have found that a lot of doctors don't really believe in fibromyalgia and they seem to think I was making it up, but the book “Beat Sugar Addiction Now!” is written by a doctor and he knows so much about it. I feel like I learned a lot about my own body just by reading the section on FMS, and it made me annoyed that no one had told me this before. I started reading the book because I thought it was a diet book and would maybe help me lose weight, and if I wasn't carrying around so much weight maybe I would feel better overall and be less achy. But it's actually a whole part on fibromyalgia is in it and I learned a lot about my hypothalamus that I never knew before. The information is good and smart science but not too hard to understand. You need to find help if you have what I have-so much pain it hurts to pull my shirt over my head or bend down to tie my shoes. I had to start wearing ugly crocs just because they were easier to put on and more comfortable, and that is not who I wanted to be-a fat person in unstylish shoes who has trouble getting in and out of the car. I feel like if I can find a doctor who will help me and I can do what it says in this book, I will get a lot better. It is written very convincingly and you can tell he knows what he's talking about. Plus he has a list to help you find doctors that treat FMS and I am ready to get treated and stop feeling like my nerves are exposed every time I move. Here's the website for Dr. Jacob Teitelbaum: http://endfatigue.com/
In the above you mentioned blurred vision and bladder problems do thing this is part of FM? I have been having problems with both. Let me know please and thanes for your sight into all this.
Hey Renae – yes, they can be part of the syndrome in some folks. I don’t have issues with either, personally, though I do with some of the other secondary symptoms. That’s one of the things that makes fibro so difficult to manage – so many vastly disparate kinds of secondary issues, as well as the primary pain. I’d urge you to try a pain log before your next doctor visit, making a special note of those symptoms on the list that you’ve experienced including the frequency and severity. The only way to treat fibro right now is to manage the symptoms, and for many of these symptoms, there ARE effective treatments! Good luck!