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Adrienne Dellwo

New Diagnostic Criteria for Fibromyalgia

By May 22, 2010

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Tender-point exams are no longer the only way to diagnose fibromyalgia -- the American College of Rheumatology has provisionally accepted alternate criteria for diagnosing the condition and gauging the severity of symptoms.

The diagnostic criteria doctors have been using were established in 1990.  Once other possible causes of symptoms were eliminated, diagnosis was based purely upon pain.  It had to be on both sides of the body, both above and below the waist, along the axial skeleton (head, throat, chest, spine), and also in at least 11 of 18 specific spots on the body that are called tender points.  Symptoms have to have been present for at least 3 months.

The tender-point exam has always been controversial for several reasons.  First, it was originally intended as a qualifier for clinical studies, not as a diagnostic tool.  Second, it's subjective because it relies on a patient's self-reported pain.  Third, because symptoms fluctuate so much, the number of tender points may vary greatly from one exam to another.

Until we have a diagnostic test that's based on blood markers or imaging, we probably won't have a perfect diagnostic test.  (This is true of many diseases, especially neurological ones.)  Still, researchers believe they've come up with something that works better -- they say when the looked at a group of previously diagnosed fibromyalgia patients, the tender-point exam was about 75% accurate, while their criteria caught it 88% of the time.

New Diagnostic Criteria

The new criteria keep the requirements that other causes be ruled out and that symptoms have to have persisted for at least 3 months.  They also includes 2 new methods of assessment, the widespread pain index (WPI) and the symptom severity (SS) scale score.

The WPI lists 19 areas of the body and you say where you've had pain in the last week.  You get 1 point for each area, so the score is 0-19.

For the SS scale score, the patient ranks specific symptoms on a scale of 0-3.  These symptoms include:

  • Fatigue
  • Waking unrefreshed
  • Cognitive symptoms
  • Somatic (physical) symptoms in general (such as headache, weakness, bowel problems, nausea, dizziness, numbness/tingling, hair loss)

The numbers assigned to each are added up, for a total of 0-12.

This next part is really interesting to me.  Instead of looking for a hard score on each, there's some flexibility built in, which recognizes the fact that fibromyalgia impacts us all differently, and that symptoms can fluctuate.

For a diagnosis you need EITHER:

  1. WPI of at least 7 and SS scale score of at least 5, OR
  2. WPI of 3-6 and SS scale score of at least 9.

What this does is allow for people with fewer painful areas but more severe symptoms to be diagnosed.

Something else I really like about this is that it finally includes cognitive symptoms!  For many of us, "fibro fog" is as debilitating or even more debilitating than pain, yet the old criteria didn't even mention it.  It also recognizes the difference between "fatigue" and "waking unrefreshed," which I believe is an under-recognized distinction in the medical community.

A quick note about "somatic symptoms": strictly speaking, somatic means physical.  The term has gotten a bad rap in the fibromyalgia community because it's been used to suggest our symptoms are the result of somatization, which means "physical manifestations of a psychological illness."  On its own, however, the word somatic does not imply a psychological basis.

The full article on the new criteria isn't yet available for free online, but a PDF of an appendix including these criteria is.  It has the list of painful areas for the WPI and a long list of somatic symptoms that could be considered.  It's here:

If you're undiagnosed or tentatively diagnosed, you may want to take that to your doctor.  Be sure to let him/her know that it's from the American College of Rheumatology and was published in Arthritis Care & Research.

What do you think of the new criteria?  Will they help clear up controversy and confusion?  Do you like the built-in flexibility?  Leave your comments below!

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Comments
May 22, 2010 at 6:40 pm
(1) DrCPainMD says:

The new diagnostic criteria should help-If the evaluating doctor knows about them. The problem with Fibromyalgia is that it exists in the “art” spectrum of medicine. There is no scan, or test that can be performed to establish the diagnosis. The symptoms remain vague. While very real to the individual with the syndrome, they are very hard to identify and pin down in a 10 minute interview, which is the usual amount of time one spends with the doctor in a follow up visit. The bottom line is that people must inform themselves. They must come to the doctor armed with their own differential diagnosis, rather than rely on the doctor to get it right. In the age of rapidly changing health care delivery, it is more important than ever to educate oneself. That is why websites like this are invaluable.

May 23, 2010 at 9:01 am
(2) JH says:

I think if people choose a rheumatoligist as there doctor they will find them totally up on this I was diagnosed with RA 10 years ago and two years later Fibro was added
Mos people do not go to the right doctor. I had to explain to my gynecologist how they treat my RA by attacking certain proteins. I am always shocked at how little doctors do really know. If you think you have Fibro .. see a rheumatoligist and do not waste your time or money

May 25, 2010 at 2:18 pm
(3) jon says:

Preposterous!Where are the real studies?Where is medicine?They should try solving the “mystery”,find the real problem,specify it.There are many fm sufferers who are mentally healthy but in severe pain.Some are disabled.There may be coexisting conditions but the main problem is extreme pain and fatique!But offcourse,how will Lilly and other drug companies make money?

June 17, 2011 at 12:25 am
(4) Toni says:

Thanks for your comment jon! I was diagnosed in 1997 and I have been on every drug known to man. I am disabled and in constant chronic pain along with CFS. You are so correct in the money making comment! My insurance will not cover some of the recommended drugs for the CFS. Some are as high as 1,000 per month out of my pocket. So I have to live with the pain and fatique. It makes life very difficult. I appreciate people like youself realizing it is real pain. Alot of people look at you like there is nothing wrong. What they do know is it is heridetary, I shutter to think my children or grandchildren could end up in this pain.

May 28, 2010 at 4:12 pm
(5) Ilse Schmeller says:

So they have developed new criteria. And what does it help? What does it change? What does the built-in flexibility change ?
People still have the same symptoms, the same pain, the same debilitating conditions.Doctors may add some points on their scale of what makes FM, but that still means :no real treatment, no real help, no better knowledge about the source of it all, even if the understanding MAY be better. Still, it does not really help. Sorry, that´s what I think.

May 28, 2010 at 4:30 pm
(6) Barbara Lee says:

The link to “Appendix A” generates an error message. Is there any other source for this information?

From Your Guide: My apologies — the location of the appendix changed. The link has now been updated! ~Adrienne

May 28, 2010 at 5:56 pm
(7) Sherry says:

Also received error message after clicking on the link.

May 28, 2010 at 7:17 pm
(8) Francesca says:

As a scientist and a sufferer of both fibromyalgia and CFS (as well as a wealth of other issues), I have to comment that I feel that this IS an extremely important breakthrough. Remember that 20 years ago “it was all in our heads.” Some doctors still think this way. I can’t tell you how many doctors I have seen just in the last 10 years who have suggested that it is a psychological problem, and if I were just happier then I wouldn’t feel any pain.

To improve the diagnostic criteria actually makes a HUGE difference, for those doctors that actually receive this information. Let me remind you that some of the doctors we see haven’t been to medical school in a loooooong time, and there is so much ongoing research, and so many new findings every day that they couldn’t possibly keep up with everything- they’re only human, they’re not gods. People tend to forget that about doctors. They’re not perfect- they make mistakes, they don’t know certain things, but the GOOD ones will do their best and try to keep up as much as they possibly can. Try to remember also how much time they spend in the clinic, and even if they did read 24/7 they still couldn’t go through all the journal articles in all the medical journals in the world to be able to read every study. What these new diagnostic criteria have done is take all the major studies in the past few years, and created a new way to diagnose fibromyalgia that can be done by doctors that aren’t rheumatologists as well. Many primary care doctors do not feel comfortable evaluating tender points, and so this will give them something they can feel comfortable with — a scale that the patient can use to describe their pain.

Another thing I like about this scale is that it does depend on the patient. No one knows better than YOU how YOU feel. A doctor can’t tell me how much pain I have in a tenderpoint, and therefore, whether or not I have fibromyalgia. I think these new criteria are very empowering for us.

And, finally, I think it’s a little bit rude to just discard these new criteria simply because they haven’t found a cure yet. These criteria are not meant to make us “feel better.” They’re meant for us to be RECOGNIZED. Once we are recognized, we can get treated. I know there have got to be thousands, if not millions, of people out there who have fibromyalgia, and just don’t know it, or didn’t “fit” the diagnostic criteria. I just met a fellow the other day who said he can’t get a diagnosis because he doesn’t have tenderpoints, but he has every other symptom. By loosening the stringency on the diagnostic criteria, I’m sure that at least this one individual will be able to get the help he needs.

Don’t forget that the more of us there are out there with a diagnosis, the more people will pay attention, the more money will go into research, and the more likely we are to develop new treatments, or even a cure.

Science is an extremely difficult process that takes many years, a lot of money, and a ton of hard work. People who have never worked in a lab or a clinic have no idea what goes into it. I’m not trying to be rude, I’m just trying to paint a realistic picture of how hard it is to get findings in the lab about medical conditions. The human body is so incredibly complex, and everything interacts with everything else- it’s very hard to tease it all apart. There is still so much we don’t know about the body, or even about infections. New infectious agents are constantly coming to light, and I’m sure that will continue. There are parasites, for example, in the Amazon that haven’t been discovered, or have recently been discovered, and so they aren’t well studied. All these things need is more manpower and more money from the government in order to find cures and treatments.

So, rather than seeing these diagnostic criteria as a bad thing, I see them as an EXCELLENT change in the field of rheumatology, and I welcome it with open arms. I hope that by accepting more patients as having fibromyalgia, this will get the government’s attention. Also- remember your best advocate is YOU. Talk to your congressman or your representative. Send a letter to the president. Maybe one person can’t always make a difference- but if we all do it, then we can. Just look at AIDS. People were shunned in the 80s because no one knew what caused it, people didn’t understand how it was spread, and people inevitably died after HIV infection. Now we understand how it invades cells and causes infection, how it can be prevented, and how it can be controlled. We don’t have a cure yet, but it has only been some 20 something years since people really started studying it. I have seen recent literature that suggests gene therapy using a mutated form of a cellular protein that leads to resistance of infection. This resistance has been discovered because there are certain people in Europe that are completely resistant to HIV infection. By actually gaining acceptance, money, manpower to study HIV, these people were discovered- and they may be the key to finding a cure for AIDS. With a bit of luck and hard work, the same can go for fibromyalgia. The more patients we have, the more studies can be done.

So heads up – this is a good thing!

May 28, 2010 at 7:53 pm
(9) PAM says:

I WENT TO TOOLS–THEN ON THE DROP DOWN IT SAYS–DELETE BROWSING HISTORY. I UNCHECKED THE COOKIES BOX-THEN TRIED THE LINK AGAIN AND IT WORKED.

MY SYMPTOMS ARE THE SAME REGARDLESS OF “NEW” CRITERIA. I AM HEADED TO THE MAYO CLINIC IN ROCHESTER, MIN. HAS ANYONE BEEN TREATED THERE FOR FIBRO?

SINCE AUG. 2009 I HAVE BEEN PROFUSELY SWEATING. IS ANYONE ELSE DOING THIS? MY PAIN HAS BEEN PRETTY GOOD SINCE I STARTED WEARING THE 75 FENTENOL PATCH AND USUING OTHER BREAK THROUGH OXY 10/325 AS NEEDED.

A DR. SAID I WAS IN REMISSION…I SAID I HAD GOOD PAIN MANAGEMENT ON BOARD! DO WE GET REMISSION?

May 29, 2010 at 2:59 pm
(10) Peggy says:

Pam, I too had out of control
Sweating. Pls get your thyroid checked. It regulates your body temp.I didn’t know what was wrong with me either. Until I had my thyroid tested& found out I had developed full blown thyroid disease. It took 2 yrs of med. Adjustment to get well!! I guess just another side effect of this disease. As far as remission goes – the only time I feel some what better is when I make my self get more sleep. The more I over sleep the better I am. This isn’t always possible& doesn’t always work great but it does help. Thanks everyone!

May 30, 2010 at 2:37 pm
(11) Rani says:

First, I’d like to thank Adrienne for her newsletter and for consistently bringing to light new discoveries that can affect those of us with FM.

Second, thank you to Francesca for your salient points in your comment. I am inclined to forward this particular article to my pain management doc (I don’t have a rheumatologist) who treats my FM for his perusal. I’m keenly aware that, while he’s young, progressive, and does his best to keep up with the “latest and greatest,” it’s simply not possible for him to read every manifest that comes out on every condition he treats.

Lastly, I feel a more positive bent toward the new diagnostic criteria, as I think it could be beneficial for those who might slip under the radar, so to speak, with the “traditional” diagnostic methods. And I sure would love to see more funding and attention thrown toward research of our condition and how to better treat it, as well as more widespread acceptance of it, not only by the medical community, but by the general public. I know I’ve come up against resistance — even to the point of being called nothing short of a liar — about my FM and the way it affects me in the workplace. And trying to explain what FM is and what it means to my mother and sister when I was diagnosed was challenging. They still really don’t completely get it, although they’re very sympathetic.

I wish all of us who struggle and suffer with FM anything that can bring us less pain, more hope, and better lives, and if new diagnostic criteria is a step in that process, then that’s A-OK with me.

May 30, 2010 at 6:20 pm
(12) Kathy says:

It bothers me that Dr. Frederick Wolfe (the doctor who original defined fibromyalgia) is the lead in developing this new criteria. He doesn’t “believe” in fibromyalgia (I wasn’t aware fibro is a religion.)

“Wolfe now questions the validity of fibromyalgia as a disease. He considers fibromyalgia a physical response to stress, depression, and economic and social anxiety and believes the associated symptoms are a normal part of everyday life.” (from Wikipedia)

I wouldn’t want him anywhere near this with his bias!

May 30, 2010 at 6:59 pm
(13) georgia says:

I would never wish this condition on even my worst enemy yet I often wish everyone could live in my body for just one hour to experience the horrors of this syndrome.
I envy those who have conditions such as migraines, herniated disks, torn miniscus (sp?), etc.; those are localized pains unlike our head-to-toe malady. I can recall & relate to anyone every step leading to my fibro. I thought I was nearly dying.

This may sound like a skeptic, but I feel a cure will never be found. Although there supposedly is no damage to tissues, organs, etc., I feel that the condition is irreversible. I hope some day someone proves me very wrong.

May 31, 2010 at 12:09 am
(14) Cathy says:

I think that the new criteria is progress! Doctors and society are still in a big learning curve for these illnesses. Don’t get confused with somatic — like the article says it means physical. I think it’s only the uninformed that think FM or CFS are psychologically based. There’s a psychological element but it’s not a mental illness.

June 1, 2010 at 8:17 pm
(15) weeroo says:

So glad they have included cognitive dysfunction in the diagnosis. That was the first symptom I was concerned about, the pain I could live with at that time, had been living with back pain since a young age, but when I started having severe short term memory loss, and ‘false’ recall of things memorised since grade shcool I new something was very very wrong.

June 3, 2010 at 11:20 am
(16) Bob Smith says:

It is about time they came up with at least something new! the old approach just didn’t cover us all. Maybe now a few more men might get a diagnosis, I believe that it is not so seperate as the numbers suggest and men are effected as often as women but just don’t show up on the testing.

June 5, 2010 at 6:24 pm
(17) lloyd says:

I don’t understand Bob’s reference to gender in regard to the new criteria. Most of the male fibromites I know have pretty clear symptoms in regard to the traditional tender points, whereas more women I know have limited areas of pain and lean a bit more towards the chronic fatigue spectrum. Unfortunately, there is as much danger in overdiagnosis of fibromyalgia as in underdiagnosis. I know several people recently diagnosed with fibro who don’t have widespread pain; and I wonder if they don’t have some myofacial pain syndrome. Indeed, the head of our support group turned out to have reactive arthritis (diagnosed at the Cleveland clinic); I was always skeptical of her fibro diagnosis because she did not have tender points.

August 31, 2010 at 10:17 am
(18) Patricia says:

I clicked on the link but found nothing but the abstract of the article. Can anyone email me the info in the appendix?

From Your Guide: Sorry about that — for some reason, they keep changing the URL. I’ve updated it (again), so hopefully it’ll stay put now! Thanks for pointing it out! ~Adrienne

July 11, 2011 at 6:57 am
(19) martina says:

the new criteria high lights the fibro fog a part of fybromyalgia which is very distessing for suffers esspecially before diagnoises when you are not confused and unaware of whats going on. it also makes clear that it is real and not in the head as many people belive when you first start showing symtons. this a briliant break through .

August 16, 2011 at 8:07 am
(20) LaNaya says:

My mom was diagnosed with Fibro years ago. She’s on so many medications that I can’t even keep track. There was a point where I was contacting her doctors, telling them that they needed to evaluate her meds because they were basically slowly killing her. I would watch her fall asleep standing up and watching her drive was a scary sight. I would say that was when she was diagnosed and was beginning to be prescribed pain meds and muscle relaxers. Now, I can say she is an addict. It makes me sad. My parents adopted my brothers 3 and 4 year old children due to drugs and I’ve honestly seen her improve tremendously since the adoption due to her activity level being increased. She believes everything can be taken with a pill and it just makes me so sad to see. I believe doctors NEED to focus on Fibro diagnostics because of this reason. Treatment is not as simple as a prescription pad. She needed the right treatment, not a bunch of pills.

January 1, 2012 at 11:28 am
(21) Lynn Staples says:

I live in the UK, so don’t have the same issues of insurance as US do, but in reality we don’t get the same treatment either. I’ve read about many new drugs in the US which Dr’s here have not even heard about.
What ever these new guidelines show, it’s still not hard facts, as in an x-ray, or blood test to confirm what we as Fibro suffers know is there. What hope do I have when even my own sister questions, “How do you know it’s Fibro”? Just explaining because all the other tests were negative, and I am tender (to say the least more often than not) in ALL of the points used in diagnosis, even my cat standing on my leg is so painful I have to move them! But still my sister questions. I’ve been tentatively diagnosed by my GP, as I was already on anti inflammatory and pain killing medication for osteo arthritis, all I get is keep taking the tablets, never try anything new, no referral to rheumatology, so I’m stuck with suffering as I do each and every day!

February 3, 2013 at 11:45 pm
(22) Billy says:

Seriously… look up the postural restoration institute. It just might change your life

July 8, 2013 at 5:16 pm
(23) Nick says:

I’ve been getting progressively worse over the past few years. I’m now to the point that I’ve had to stop working and seek medical help. It is amazing after reading all the comments dating back 3 years and I’m running into doctors that still think its all in my head. They have run ever test imaginable on me with no positive results. Went to a rheumatologist, he said that my issues were caused by my weight (I’ve gained 15 lbs since I was at 12% body fat). That weight was put on because I cannot do anything. Even go for a walk with the dogs. Then he blamed my nutrition without knowing anything about it. I eat extremely healthy. Try maintaining 12% body fat at 46 years old and not eat healthy. Last but not least, he blamed my sleep apnea. I’ve had sleep apnea for 12 years and now all of a sudden it’s affecting me in a way that it has never done before. His total refusal to even acknowledge the possibility of me having FMS is just amazing, Now I have to pay for a mapping of my brain to look for neurological issues. All my doctors except my rheumatologist believe I have FMS. On the up side, I read an article that was published on June 20, 2013 in regard to nerves in the feet and hands http://www.medicalnewstoday.com/releases/262132.php that could actually lead to physical proof of FMS. I hope so, because I’m getting sick of arrogant, opinionated doctors with God complexes telling me that it’s all in my head.

September 9, 2013 at 1:17 pm
(24) Becky says:

I am so glad they have finally included “fibro fog”. Along with the cyclical physical issues, fibro fog is a big problem for me, my brother, and my sister (all of us have fibro). I do a quick test every morning to see if “all my neurons are clicking”. I do the Sudoku in the newspaper. On Mondays (the easiest Sudoku), if I haven’t figured it out by 10-15 mins., I know I had better to stay at home, and do nothing that requires any critical thinking. Same goes for the rest of the week.

December 4, 2013 at 9:08 am
(25) Trudie says:

Both the new & old criteria apply to me. I’ve also experienced the profuse sweating that Pam mentioned above.
I became very ill after moving into a house that had just been painted & was situated within 100 metres of a large phone tower. Neither of which I paid much attention to (unfortnately) before I moved in. I became very ill within days: Dizzy spells, blackouts, numbness, nerve pain, tingling, awful pain through my head, chest neck, heart palpitations & radiating/burning in many of the soft tissue areas of my body. I was particularly aware that my endocrine system was being affected, as the pain through my head & ‘brain fog’ were terrible & I became so exhausted, especially upon waking. My circadian rhythms & menstrual cycle went into chaos, I began bleeding every day & also realised that the pineal gland (which usually produces melatonin, allowing us to sleep & regenerate overnight) was completely out of whack. Particularly stressful was the fact that I could feel all of this was happening but no-one would listen!

December 4, 2013 at 9:25 am
(26) Trudie says:

After being treated like an idiot by my GP, I got in touch with the CFS support group in Australia who were able to give me a list of 3 doctors who had undergone further training in Environmental Medicine/illness. I made an appointment to see one of them & was eventually diagnosed with Fibromyalgia, Multiple Chemical Sensitivity & Electro Sensitivity. This doctor was very helpful & shed much needed light on the situation for me.
He said that if I moved out into the desert, away from the city & it’s many phone towers & transmitters, the likelihood of me getting well quite quickly, was very high. He’s seen it happen many times before. He also said that despite my experience (& his extensive research) the medical board/fraternity does not yet recognise Electro sensitivity or phone towers, as main contributing factors in the high incidence of fibromyalgia… He went on to explain that every diagnosed illness is apparently given a code & only once it has a code is it considered to exist. ‘Electro sensitivity’ hasnt yet been given a code. In turn, the code is only given to an illness once it has a treatment protocol ie: a pharmaceutical to treat it. Thus the pharmaceutical industry/companies appear to have incredible power here. He went on to explain that he now works only 2 days a week giving support to those with fibromyalgia & other environmentally induced conditions, under the radar, in a small quiet clinic He is here because he was threatened with being struck off the register if he persisted with this line of enquiry.
I was very grateful to have found this doctor & really glad I didn’t give in to the GP that tried to convince me I was just depressed & needed antidepressants.

December 4, 2013 at 9:33 am
(27) Trudie says:

I’ve also been lucky enough to have found some great support & alternatives to help me through… & there have been a couple of things in particular:
I had an environmental energy assessment on the property I’m living in. The readings taken revealed the amount of radiation & frequency being emitted from the phone tower, among other things . All of which were far higher than (in excess of) the EU & World Health Organization safety standards.
EMR Australia is a great resource also, its a website created by a doctor in support of those experiencing adverse effects of Electro Magnetic radiation. It provides an online questionnaire re: the symptoms of EMF radiation, the most common of which are Fibromyalgia, MCS & CFS. They also have lots of other support material.
The enviro energy assessor I hired is a scientist who was able to greatly alter & diffuse much of the radiation I was being subjected to. This had a far greater & more positive impact than i could have imagined, returning my menstrual cycle to normal (after 10 months of pain) within 5 days of installing the diffusion antennas.
I still have residual numbness & tingling, particularly when using iPhone, computers, wifi… & I still wake up feeling not quite right, but I’m on the mend & I don’t have anywhere near as much pain as i did previously

December 4, 2013 at 10:29 am
(28) Trudie says:

A brief note re: how mobile phone tower technology affects the endocrine system:
Mobile phone towers emit particular frequencies of microwave radiation (non-ionising radiation) which is pulsed at a constant & ongoing rate.
The constant pulsing of these microwave frequencies has a particularly detrimental effect on the human energy system, because it interrupts the natural functioning of the endocrine system & entrains it. Thus upsetting the natural circadian rhythm by disturbing the pineal gland which is responsible for melatonin production (& the regulation of our circadian rhythm).
Due to the pulsing microwave frequencies taking over
the body’s natural rhythm & upsetting melatonin production, the body experiences many symptoms of burnout, stress & fatigue because it never gets a chance to go into the natural rest & regeneration phases required to maintain basic balance, health & wellbeing.
This can result in a number of adverse health conditions, which can vary from person to person according to one’s constitution, sensitivity, genetic disposition & other factors.

December 7, 2013 at 7:43 pm
(29) Caren says:

Get off your FAT ASS and MOVE. Moving cures fibro, plain and simple.

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