Wednesday, June 8, 2011

My critique of “Diagnosing fibromyalgia: Moving away from tender points”

When I got up this morning, the last thing on my mind was writing an advocacy piece, let alone a blog, however, following my own philosophy of “seize the moment” I found my mind would not let me set it aside.

In an effort to raise awareness of centralization in FM from the peripheral input of pain by myofascial trigger points, the following letter when out to doctors who have been kind enough to communicate with me on this issue from both sides of the fence. A Bcc went out to other advocates to provide opportunities for them to carry this forward.

First and foremost, a huge THANKS to Marla Silverman at PANDORA for bringing this to my attention and for giving me the privilege of commenting.

Following is my letter, which is pretty much my comment to Marla’s request with a few clarifications. After this letter is the full abstract for “Diagnosing fibromyalgia: Moving away from tender points.”
RE: Diagnosing fibromyalgia: Moving away from tender points
The Journal of Musculoskeletal Medicine. Vol. 27 No. 4

Hello Dr. Gerwin, Dr. Bennett, Dr. Russell and Dr. Whiteside

Marla Silverman, President of the Patient Alliance for NeuroEndocrineimmune Disorders Organization for Research and Advocacy has asked me to comment on the noted article in the Journal of Musculoskeletal Medicine. I thought you all might be interested in what I had to say:

It is refreshing to see continued acknowledgement of the science by noting this [FM] is a diagnosis of inclusion. No doubt the aspects reviewed in 2010 were a precursor to the New Proposed Diagnostic Criteria for Fibromyalgia. The Proposed criteria do look at inclusion versus exclusion by noting the comorbid conditions with FM and the centralization of pain. My beef and the beef of others is that they are not including the assessment of myofascial trigger points. If we know this is the main complaint in FM, and science shows repeatedly that MTrPs are peripheral pain generators to the centralization of FM, why wouldn't we acknowledge their presence so they can be appropriately treated?

Exercising a muscle with active or latent trigger points (TrPs) will lead to further dysfunction and shortening [of muscle] and development of TrPs in compensating muscles unless the TrPs are treated prior to exercise. It is one of those double edged swords.

Exercise, stretching and aerobic (there is believed to be a cellular hypoxia related to TrPs) conditions muscles and helps prevent TrPs. The problem is, with FM, TrPs are not the same as in the average person who sustains an injury. It appears that the injury occurs at a very basic cellular and metabolic level, hence the release of pro-inflammatory cytokines in the absence of injury and no inflammation measured in FM, and the presence of elevated sensory preceptors in FM as indicated in a recent study [“the FM-only group had significantly higher baseline quantities of mRNA for sensory receptors P2X4 and TRPV1 and for the cytokine IL10.” Based on the group’s earlier work in mice, they hypothesize that these markers represent increased signal for muscle metabolites that would lead to widespread increases in muscle pain and secondary hyperalgesia in skin throughout the body. Light, et al., 2011].

Side Note:
This study was collaboratively funded by the American Fibromyalgia Syndrome Association (Associated periodical “Fibromyalgia Network News”)
CFIDS Association of America,
And the National Institutes of Health

To me and to others who have studied this extensively, such as Devin Starlanyl, Dr. Gerwin, Dr. Bennett, Dr. Hong, Dr. Ge Hy, etc. this all seems pretty basic, but continues to be overlooked.

The article will help raise awareness to the centralization of FM and that certain conditions are common in FM because of brain defects or defects in the messaging system, but it is a very minor start in educating about the aspects of FM. It does take a multimodal approach, but part of that is myofascial therapy, which again, has been omitted.

I found it strange that the authors commented that opioids have been shown to be of little benefit, when there are other studies that show the contrary, and they say that the SSRIs and SNRIs are indicated, as well as Lyrica and Neurontin like drugs, when the evidence of their success in treatment of FM has been very underwhelming. Of course, the benefit of medications of any of these classes would depend on other co-existing conditions.

My biggest concern, as you know is that MANY with FM have migraine and treat them with triptans, which are contraindicated with the SNRIs or SSRIs or combo drugs such as Cymbalta. This MUST be considered for patient safety.

Patient education is imperative, I certainly agree with that, but so is physician education. Everybody needs to be on the same page. The patient should feel free to roam the internet to educate themselves and not be put down for doing so. We are in an entirely different age than we were even 10 years ago. Many patients and patient advocates have saved lives by being entirely informed.

This was the most important bullet of the entire article.
•We refer the patient for sleep study, if indicated; physical therapy; or aquatic therapy. Most patients can motivate themselves for pool therapy. Refer the patient for sleep medicine if that is indicated by the results of the sleep questionnaire.

These days if the doctor asks for a myofascial assessment, the physical therapist will be specialized in this and be able to report back to the physician on the presence of myofascial trigger points, about dysfunction, range of motion of the muscles involved, etc. When this starts to happen, doctors will set up and take note. Dr. Robert Bennett once told me that in all of his years in clinical treatment of FM, he never had one patient that didn't have myofascial trigger points, and Dr. John Whiteside has told me the same. Of course they know how to assess for them, this is paramount.

There you have it, my take. Hope that helps, and TY for valuing my opinion.

Harmony and Hope, Celeste

Light AR, Bateman L, Jo D, Hughen RW, VanHaitsma TA, White AL, Light KC. Gene expression alterations at baseline following moderate exercise in patients with chronic fatigue syndrome and fibromyalgia syndrome. Journal of Internal Medicine.2011 May 26. doi: 10.1111/j.1365-2796.2011.02405.x.

Diagnosing fibromyalgia: Moving away from tender pointsEvaluation now emphasizes “areas of pain” and seeing the “whole patient”
Dr Khasnis is a fellow and Dr Wilke is a staff member in the department of rheumatic and immunologic disease at the Cleveland Clinic in Ohio.

Since the American College of Rheumatology definition of fibromyalgia syndrome (FMS) was set in 1990, multiple studies have lent support to relying less heavily on tender points. Patients may indicate “areas of pain,” and the diagnostic process includes other common symptoms. The Symptom Intensity Scale provides an objective measure of pain and fatigue. Recognition of FMS may be aided by the presence of other conditions. FMS should be a diagnosis of inclusion rather than exclusion. Multimodal management of FMS starts with patient education, and exercise is a keystone of treatment. Sleep optimization is an important issue. Depression deserves investigation, recognition, and optimal management. Pain management in patients with FMS often is challenging. A combination of patient education and nonpharmacological and pharmacological measures is key to management. (J Musculoskel Med. 2010;27:155-162)

Full article can be viewed at Fibrotalk Blog,

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