Monday, April 4, 2016

ACR Responds to Inquiry on Fibromyalgia Criteria





As many of you know, I wrote a letter to the American College of Rheumatology (ACR). You can find my letter at Criteria for Fibromyalgia on My Radar AGAIN!

Following is the reply from the senior director of quality at the ACR and my response to her is after that.


Reply from ACR Senior Director:

Ms. Cooper,

Thanks for your inquiry.  My apologies for the delay in getting back to you this week; I am away and trying to catch up on email responses.

As you and Jocelyn have correctly noted, the ACR did provide preliminary endorsement of the Wolfe et al criteria in 2010.  This endorsement was published and cannot be “undone,”  so readers can and will continue to see that endorsement online and in print.  However, since that endorsement was made, the ACR has decided to no longer endorse diagnostic criteria for any disease, for reasons Jocelyn explained.  So readers won’t see a new or updated endorsement from the ACR online or in print.

For every criteria the ACR endorses, science continues to progress after the endorsed publication, and different things are published over time.  This means readers can always find more recent information than something published 6 years ago – and that is the case here.  An evaluation of the newer publications and whether they are better than the older ones should be done by readers and experts in the field, but at this time, the ACR does not plan to do it, given the ACR’s decision to no longer review diagnostic criteria for ACR endorsement.

I hope this helps clarify things.

Best regards,


My response:

Thank you so much for answering in such a timely manner. I am eager to share with my colleagues and fellow patients. 

I am sure those at the ACR understand my concerns that many rheumatologists (and general practitioners) are unaware of the ACR position on the fibromyalgia diagnostic criteria. Many articles come across my desk that suggest clinicians embrace the Preliminary Proposed Criteria, even though the ACR has not endorsed it.

In light of newer research, as you say, the criteria are a dinosaur. Yet, because of the strong emphasis on somatic complaints without probable cause, fibromyalgia is now becoming a catchall diagnosis again. I have had more than one patient tell me their physician now says fibromyalgia is a psychosomatic illness. I am certain you would agree that this is a travesty for the some five million Americans with this painful and disorienting syndrome. My some 5,000+ contacts report they do have another pain disorder, such as CRPS, EDS, Migraine, spinal disease, chronic pelvic pain, or other rheumatic conditions. I am sure the ACR is aware of the autonomic effects that have been studied by many different groups of researchers with consistent results, in particular heart rate variability. I appreciate that the ACR does recognize that FM often co-occurs with other rheumatic disorders, thumbs up! I would take it a step further and say it co-occurs with other pain conditions, as stated in the Alternative Criteria led by Dr. Robert Bennett.

I truly appreciate that the American College of Rheumatology has decided not to take a position on diagnostic criteria at this time. I appreciate that we need a biomarker such as the FM/a test, or loss of heart rate variability. But in the meantime, I have concerns that patients will not receive the appropriate treatments because their complaints will be dismissed as just, more fibromyalgia. And when other conditions have been ruled out, clinicians should understand that there are objective tests to investigate the common complaints of fibromyalgia. Those include surface EMG for muscle spasticity and muscle tension or thermal changes in the periphery. Ultrasound to locate and treat myofascial trigger points which cause peripheral pain in many chronic pain disorders , a sleep study to evaluate sleep competency, a neurocognitive exam to evaluate cognitive disturbances, and a nocturnal EKG, which can be done with a sleep study to evaluate heart rate variability. These are all things that may be contributing factors to fibromyalgia and can be addressed and treated appropriately.

Once again, thank you for your time and consideration.

Respectfully, Celeste

~ • ~ • ~ • ~ • ~ • ~

"Adversity is only an obstacle if we fail to see opportunity."  
Celeste Cooper, RN
Author—Patient—Health Central Chronic Pain Pro Advocate

Celeste’s Website: http://CelesteCooper.com

Learn more about what you can do to help your body function to its potential in the books you can find here on Celeste's  blog. Subscribe to posts by using the information in the upper right hand corner or use the share buttons to share with others.

All answers and blogs are based on the author's opinions and writing and are not meant to replace medical advice.  

11 comments:

fibromyalgiapatient education said...

Nice post. It like it so much.
Thanks for sharing.
Fibro Patient Support Organization

Celeste Cooper said...

My pleasure.

Judy Eslinger said...

Thank you for always looking out for us (patients) and sharing information.

Celeste Cooper said...

Truly my pleasure to be a conduit for messages to help those who share this journey. I always felt God led me to be a nurse, to care for others because he thought I would be good at it. And, I was, and still am, just in a different way. I have no doubt He knew the plan all along.

kathryn said...

Celeste, why is Small Fiber Neuropathy not mentioned? It is a diagnostic test, isn't it?

Celeste Cooper said...

Kathryn, there needs to be more studies, those that replicate the same results. It is a possible biomarker, however, the FM/a test is showing more promise, and small fiber neuropathy could be the result of immune dysfunction, rather like joint changes or organ damage from RA. I have a blog coming up on the FM/a test, and the research has been replicated. The test is now covered by many insurances, including Medicare.

kathryn said...

Thanks, Celeste, appreciate the answer.

Yes, replication of studies is so vital for moving the field forward, and so often it seems that never gets done. In this instance, I think it will.

Thanks so much for all your informative work, Celeste! ((HUGS))

ctravlngrl said...

Again, I can't thank you enough for your leadership, support and being the strong conduit on our behalf that you are.
I seem to be going round & round with the acute bursitis in my hips diagnosis from my Rheumataligist, with series of painful shots that do little to help. Should I be seeing a Neurologist instead? I am so tired of getting no where. I need some direction with hope from a doctor who will listen to me. Any words of advice?
~Corrine

Celeste Cooper said...

Corrine, TY, my pleasure thanks to the support I receive from so many. I cannot give medical advice. However, if what is being done isn't working, then it's either not the right diagnosis, or it's the wrong treatment. Bursitis can often be the result of myofascial trigger points pulling on the joint or it can be a misdiagnosis because it is myofascial pain instead of inflammation in the bursa. Piriformis syndrome is another possibility. I would first see a chiropractor, physical therapist, or pain physician that understand how the myofascia works and is away of myofascial treatments, such as myofascial release, Travell and Simons trigger point theray, or active release. Do you have joint hypermobility? I have had bursitis, and ileo-tibial band inflammation because of unstable hip joints, but I also have MPS because of hypermobility. Sometimes it take a multi-modal approach to get things to calm down. I know it sure does for me. My pain doc did a special MRI on my pelvis and found a cyst at S3 (an unusual place to have an epidural. Getting the right treatment in the right place is imperative. All the rest were like finding a needle in a haystack. Voila, epidural at S3, nerve pain gone! And, my pelvic pain too. Still have to have a tune up, but when I think of the number of nights of no sleep... well. The most important is that whoever you choose, make sure they are advanced trained in myofascia. A good physiotherapy PT can sure help you unravel the mess. A good physician that specializes in physiotherapy and rehab might help too, but not all are created equal, some still don't have a good handle on myofascia. Here is a link who will find helpful, I think. Piriformis Syndrome or Sciatica, Is There a Difference?
http://www.healthcentral.com/chronic-pain/c/662034/180000/piriformis-syndrome

dogkisses said...

Yes, very good article! I'm so glad you were able to further communicate with them, and your response is right on!

Celeste Cooper said...

I must say, they have been willing to engage with me. That is a plus. Unfortunately, it hasn't helped my agenda.

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