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
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
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All answers and blogs are based on the author's opinions and
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11 comments:
Nice post. It like it so much.
Thanks for sharing.
Fibro Patient Support Organization
My pleasure.
Thank you for always looking out for us (patients) and sharing information.
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.
Celeste, why is Small Fiber Neuropathy not mentioned? It is a diagnostic test, isn't it?
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.
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))
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
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
Yes, very good article! I'm so glad you were able to further communicate with them, and your response is right on!
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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