New Fibromyalgia Diagnostic Criteria Proposed- A Help or Hurt?

Earlier this month I posted that a new Fibromyalgia diagnostic criteria has been proposed that will not include tender point examinations.   Even though some of the reports I have read are stating that the revisions are “new and improved”, I have been reading mixed emotions by Fibromyalgia patients on the subject.  The new diagnostic criteria is for both the United States and Canada.   

If the tender point exam is eliminated from the diagnosis inclusions, most people then with headaches, sore joints and fatigue be given a wastebasket diagnosis of Fibromyalgia?  Even with the tender points inclusion that have been used up until now, look how many doctors diagnose people with Fibromyalgia and use it as a wastebasket diagnosis?  Is this going to cause a lot of problems  for culrrently diagnosed Fibromyagia patients?  

The American College of Rheumatology proposes the new diagnostic criteria include focusing on common FM symptoms such as sleep disturbances, fatigue, pain and cognitive dysfunction. Robert S. Katz, one of the authors of the new criteria and a rheumatologist at Rush University Medical Center, says in a Medical News Today article:

“These new criteria recognize that fibromyalgia is more than just body pain. This is a big deal for patients who suffer symptoms but have had no diagnosis. A definite diagnosis can lead to more focused and successful treatment and reducing the stress of the unknown.”

“There are numerous shortcomings with the previous criteria, which didn’t take into account the importance of common symptoms including significant fatigue, a lack of mental clarity and forgetfulness, sleep problems and an impaired ability to function doing normal activities. The tender point test also has a gender bias because men may report widespread pain, but they generally aren’t as tender as women. Fibromyalgia may be under-diagnosed in both men and women because of the reliance on 11 tender points, and also due to failing to account for the other central features of the illness.”

The authors of the propsed new criteria also said that most primary care doctors don’t bother to check tender points or they aren’t checking them correctly.  They claim that the new criteria will standardize a symptom-based diagnosis so that all doctors are using the same process.  But I wonder if  this will change will  just give the doctors that already didn’t believe in Fibromyalgia just another reason to continue to not believe in it. 

The tenderpoint exam will be replaced with a widespread pain index and a symptom severity scale:

The widespread pain index score is determined by counting the number of areas on the body where the patient has felt pain in the last week. The checklist includes 19 specified areas. The symptom severity score is determined by rating on a scale of zero to three, three being the most pervasive, the severity of three common symptoms: fatigue, waking unrefreshed and cognitive symptoms. An additional three points can be added to account for the extent of additional symptoms such as numbness, dizziness, nausea, irritable bowel syndrome or depression. The final score is between 0 and 12.

To meet the criteria for a diagnosis of fibromyalgia a patient would have seven or more pain areas and a symptom severity score of five or more; or three to six pain areas and a symptom severity score of nine or more.

Some criteria will remain unchanged. The symptoms must have been present for at least three months, and the patient does not have a disorder that would otherwise explain the pain.

With the new criteria, will all currently diagnosed Fibromyalgia patients have to go through this in order to continue to be diagnosed with Fibromyalgia?  I think there are some good changes coming with the new criteria.  Everybody with Fibromyalgia doesn’t suffer the same.  I’m sure that for some patients some of the other symptoms are worse for them than the pain.  The new criteria will include those other symptoms. 

I think one of the things that worries me about the new criteria is that if you are not seeing a rheumatologist, will the new criteria even be used?  Rheumatologists will be up to date with the changes but will regular family practitioners?  I am hoping for the best, but I’m still questioning the changes.  I guess we’ll have to wait and see what comes out of it.  What are your thoughts?  Do you feel this is a good or bad change?

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  1. I think that the trigger point tenderness criteria should not be deleted, I really think this must be included, the other criteria can be included as well. The claim that some physicians are not preforming the exam correctly can be corrected by requiring the use of a diagram that is very specific -don’t just have dots on the body, use a diagram which shows the trigger points over a diagram of the muscles. I think this would help the physicians be more accurate when testing the trigger points.

  2. Ruth Smith says:

    This new diagnostic criteria worries me, because I think it will create a larger wastebasket. If a doctor does not feel it neccessary to pursue symptoms further, then those with easily treated symptoms will be labelled and told there is no cure. The scale also relies entirely on the patients feedback, that day, which as we all know fluctuates, sometimes hourly. It reminds me of how the numbers were played with and lowered for high cholesterol, increasing pharmaceautical sales, but not reducing the illness incidence. Same thing here, no cure, just drug treatment.

  3. I am concerned that those of us who suffer with FMS will be lump in with other illnesses and in the end be misdiagnosed. It took 2 years before I was finally diagnosed with FMS. During that 2 year period, I complained of the tiredness, waking up feeling wipedout, and the widespread pain that seemed to travel from one place to another. These symptoms lead the doctors to many wrong diagnoses, including being a hypochondriac and even just being lazy. It wasn’t until both the tender points exam was done and these same syptoms described was I given the correct diagnosis. I feel that the tender points should not be done away with, but used along with the new criteria.

  4. There aren’t any lab tests that prove Fibro or CFS, and until there are, we need ALL the criteria we can get. Many of us don’t go to Rheumatologists because it’s never been proven they are auto-immune diseases.

  5. I understand both sides of this issue – the diagnostic criteria change. As a Fibromyalgia sufferer, I do not want my illness to be generalized and lumped together with anyone who happens to have a few of the symptoms. Fibro sufferers have a very specific set of symptoms in common.

    However, my 11 year old daughter has a major amount of the symptoms, but her Pediatric Rheumatologist could not “clinically” diagnose her with Fibromyalgia because she did not have enough pain/trigger points. She has quite a few, but not enough. Instead she was diagnosed with “Pain Amplification Syndrome”, even though she has more symptoms that what that syndrome is about. She is more typically a Fibromyalgia sufferer.

    The criteria change is important, but it is important that doctors perform a very careful and thorough exam to determine a certain number of different symptoms necessary for definite diagnosis.

    I hope they do get the criteria change correct to help both those that do and those that don’t fit the old criteria.

  6. When I was diagnosed for fibro, after eliminating all other diseases and disorders, the doctor(rheumatologist in Toronto, Canada) was incredibly thorough with a huge list of symptoms and asked me very fast the frequency of all of them. An exhaustive list, then she tested for my tender points and applied a “4 kg pressure” at each point, which seemed reasonable.

    I belive this above diagnosis was thorough and complete in nature, even though a lot more than just those tender points were the source of my pain at most occasions, at least it was a good place to begin.

    When I went to other doctors after that to get “second opinions” (this was in Jeddah, Saudi Arabia), these diagnoses were about half as thorough, only one doctor examined the tender points and hardly had a symptoms list to ask me about, and there are so many symptoms for a patient to remember that I think what the 1st doctor did was incredibly helpful. And the tender point exam was done without applying enough pressure, even though he confirmed the diagnosis. The third doctor hardly measured up to procedures, a fourth one actually tried to use scare tactics: said that they have to get me to do a very painful biopsy of the muscles and examine tissue, but attitude was so demeaning that I didn’t bother asking him for whether he had treatments, he seemed to imply that I was some whiny kid.

    To answer the main question, I think that all things including the scales and symptoms and frequencies should be asked about, and the tender point exam should also be kept, but should definately be tested for the tender points perhaps by a device that can apply consistent 4 kg of pressure, and perhaps to more points should be included in the exam, so as to avoid overdiagnosing people.

    Also i’d like to propose a “process of elimination checklist” for patients and doctors that atleast the average rheumatologist and general physician can help a patient fill out or fill out themselves, so that they have on record and are not being redundant in trying to eliminate other disorders.

  7. I was diagnosed with symptoms of Fibromyalgia about 10 years ago, refused to label myself and go around saying “i have fibromyalgia”. I wouldn’t accept it and took hold of quick, I took life into my own hands and thought i have to start doing something about my health and looked into ways to improve my health instead of dwelling on what i may have as a term called Fibromyalgia which clearly seems a term used when doctors can’t find what is wrong with u. it’s a bit disturbing to say the least. 2 different doctors said i have symptoms of it.

    I suffered from depression, pains, aches, sleeplessness, anxioussness, took loads of various types of anti depressants in the beginning before i knew wwhat was wrong, pills for pains, i had insomnia, i took pills for sleeping,i got very down and drank alcohol & even took drugs and when i was taking all these the symptoms went away. But they back worse after taking anything so i stopped taking and began practicing Yoga everyday. WHAT A BREAKTHROUGH WAHOO!!!! :-) Finally i found something that gave me relief, i studied Yoga for 3 years and now teach it. I also studied massage.nutrition, reflexology, head massage and remedial massage, even healing. They all helped improve my knowldege of this human body of ours and i helped others with my skills and opened a center where i could use my skills.

    BUT!!! be aware, this is an occult practice. As time went on i came to know the dangers of this spiritual practice and also stopped alot of the things i was doing like chanting and mediatation. I now teach Stretch and tone classes, have taken out the emptying the mind meditation because it is dangerous, It can open you up and allow demons to come in. We don’t really know exactly waht is going on when we go into that state of mind. We arent’ all Hindus and havent been brought uo with it either. However the physical stretches and postures proved very beneficial.

    Believing in the Lord Jesus Christ and God has given me the biggest healing than any therapy or class or pill. He is the true healer and has control over everything.

    if you accept your illness and say thanks to the Lord i’m sure you will get healed eventually. I believe sickness is here to teach us. As harsh as it may sound. Or f someone is so sick they can hardly live it is to teach the others around them how to love. God is Love. Jesus cam to preach about how to love one another. The Bible teaches it’s we must all repent. first 2 books are all about heart attitude.its all about love!

    I was doing Reiki, crystal healing, massage, cranial sacral therapy anything to get healed, it was always temporary.

    Now with daily exercise, prayers, healthy eating and a positive frame of mind, and reading a little scripture, nothing to strenuous no alcohol, very little caffeine, no stressfull people around me, a job what keeps me fit, doing massage and teaching exercise, regular sleep times, an understanding of my previous sickness i feel a whole lot better.

    i have to exercise every day without fail otherwise the pains kick in, especially in the side of the face and head and neck.

    If i drink alcohol the pains come on 10 times worse
    if i don’t exercise i feel panicky, stressed and can’t sleep

    There is a clear link that the neuro transmitters work more efficiently with regular exercise. Exercise releases endorphins natural pain killers. Marvalous.

    My blood pressure is low so exercise also boosts my circulation. The dopamine helps you sleep better which is another brain chemical released when you exercise.

    Even facial exercises release the pain in my face. That i learnt from Yoga.

    It’s all about faith, believing you will be well, don’t go around telling everyone and complaining i have Fibromyalgia because you are putting energy to that and it will manifest.

    I used to repeat positive affirmations every day. I am well today i am well today 1o times.

    I used to smile in the mirror and say today is going to be a positive day today is going to be a positive day.

    We are in control!!! we must tell ourselves we are healthy and that we will be well and accept our illness and that it is to teach us something.

    We must believe in ourselves and in God. Love ourselves and love our God.

    Our creator is in charge.

    We must learn to love. He surely loves us.

    I hope this has helped someone today. :-)

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