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.  

Criteria for Fibromyalgia on My Radar AGAIN!

Today, I am posting my letter to “Senior Specialist, Public Relations, American College of Rheumatology”. She and I have corresponded in the past on this issue, and I was assured that the ACR was not endorsing any diagnostic criteria now or in the future. Read on and you will see why I felt a need to contact her once again.

Good morning Joyce.

I am writing you because in December of 2014, you sent me a letter stating that the American College of Rheumatology (ACR) was not going to endorse any fibromyalgia diagnostic criteria. Today while researching for a freelance article, I stumbled upon the website for ACR-endorsed Criteria for Rheumatic Diseases (1) demonstrating that the ACR has endorsed the Preliminary Criteria, 2010, Wolfe F, et al. (2)

I am concerned, especially when there are other criteria better befitting the patient, i.e. the Alternative Criteria by Dr. Robert Bennett, et al. (3)  Medscape (4) and Network Rheumatology(5), and many others agree. However, there are clinicians that have been led to believe Dr. Wolfe, et al. criteria are approved, including the CDC (6). Dr. Wolfe also has a checklist on his website, ACR FM 2010 diagnostic criteria questionnaire modified for direct patient administration (7), which is misleading. And, in a Google search I find many articles stating, “How to Use the New ACR Diagnostic Criteria”.

If the criteria are not endorsed, then why was it published in a peer-reviewed journal with such a title, Preliminary Proposed, and why is it on the ACR website, Endorsed Criteria for Rheumatic Diseases? This is extremely important, because clinicians who use these criteria believe it is approved by the ACR, and people are being misdiagnosed. We are back to square one! It’s all in your head, because of these criteria. The ACR needs to take a stance on this. There is sufficient evidence to suggest there is an autonomic effect, loss of heart-rate variability, and an upset in the sympathetic nervous system response in fibromyalgia. There is much more, but suffice it to say, the ACR can search Pub Med.

I appreciate your response to my concerns and appreciate our previous correspondence. As a freelance writer for online health organizations, an author, and advocate, it is important I share accurate information. I am sure you understand.

Thank you in advance for your kind consideration. Celeste Cooper, http://CelesteCooper.com

Resources:

(1) ACR-endorsed Criteria forRheumatic Diseases

(2) Dr. Wolfe, et al.criteria

(3) Bennett R, et al. Arthritis Care & Research (2014) DOI: 10.1002/acr.22301.

(4) Fibromyalgia: NewCriteria Improve Diagnosis-Medscape

(5) Network Rheumatology

(6) CDC – Fibromyalgia

(7) Frederick Wolfe - ACR FM2010 diagnostic criteria questionnaire modified for direct patient administration.

Following is the letter I received from you in December, 2014:

…the ACR has chosen not to endorse newly developed or validated diagnostic criteria now or in the future.

You can read the full letter here or on ProHealth 

Other Reading:

• My correspondence with Dr. Frederick Wolfe. Concerns for the PPDC, DSM-5, and disregard for comorbid conditions in FM.  Are we judged by the company we keep?
• The 2013 Alternative Criteria Dr. Robert Bennett, et al. – Interpretation for patients and providers. Also available on ProHealth 

Is Fibromyalgia a Psychosomatic Illness? Med Student Asks Celeste Cooper

I received a request from a medical student taking an abnormal psychology class. He wanted to know if I thought fibromyalgia was a psychosomatic disorder.

The Psychology Dictionary defines psychosomatic disorder as:

Psychosomatic disorders are those in which psychological factors play a major role in the origin or course of the disorder.

Following is my response

[Medical student,]

You are offering others a great opportunity to learn by writing on this topic. I hope to give you the information you need [regarding whether fibromyalgia is a psychosomatic illness or not]… I will answer your questions bluntly.

"Fibromyalgia is NOT a psychosomatic illness."

While talk therapy, biofeedback, mindfulness for any chronic illness is important for coping, it will not cure or even eradicate symptoms from a physical underlying disorder. This is also true for fibromyalgia. There are many people, including myself, who have been through extensive therapy with the hopes that we could find something to help our pain. My co-author began as my therapist. He assured me that I do not have a psychosomatic illness, and encouraged me to validate that with a psychiatrist, which I did, and it was found that I do not. 

The Right Diagnostic Criteria is Critical to Understanding Fibromyalgia

Unfortunately, Dr. Frederick Wolfe has done a great deal of damage to the fibromyalgia patient. He has touted his criteria for diagnosing FM as the American College of Rheumatology criteria. I wrote to the ACR on this and they tell me they have NOT endorsed Dr. Wolfe’s or anyone else’s criteria. See my blog, [The ACR Responds to My Inquiry on the Fibromyalgia DiagnosticCriteria—Should I Scream or Cry?]  It is my understanding that the ACR is publishing an erratum on this matter in an issue of Arthritis Care and Research.

Dr. Wolfe resurrected the antiquated notion that fibromyalgia is a psychosomatic illness with his research on prevalence offibromyalgia in the German community (Wolfe, et. al., 2013).  What you don’t know is that he took a validated tool for assessing severity of somatic symptoms, the PHQ-15 (Kroenke, et. al., 2002) and tweaked it.

Dr. Wolfe’s “short form,” called the PHQ-8, regarded:

1. stomach or problems going to the toilet
2. pain in the back
3. pain in the arms, legs, or joints
4. headaches
5. chest pain or getting out of breath
6. dizziness
7. feeling tired or having low energy
8. trouble sleeping

First, why are stomach problems and problems going to the toilet lumped together? The PH-15 divides these somatic symptoms between 1) stomach pain 2) constipation, loose bowels or diarrhea and 3) nausea, gas, or indigestion. Secondly, is it 4) chest pain, or 4a) shortness of breath? These are divided in the PHQ-15. Where is the assessment for 5) fainting and 6) feeling your heart race? Patients with fibromyalgia do have 7) pain with intercourse, particularly if they have comorbid chronic pelvic pain. This “short form” could affect the outcome regarding severity of symptoms when compared to the validated PHQ-15 tool. Isn’t it possible that the validated tool is validated because of the way the questions are asked?

He even says, “The PHQ-15 is best characterized as a measure of somatic symptom severity.” So why didn’t he use it? That is the $100,000 question. Why did this escape a peer reviewed journal editor? 

The Role of Fibromyalgia Diagnostic Criteria

Roland Staud, MD et. al. (University of Florida, Gainesville, 2010) had this to say, in part, about the provisional diagnostic criteria which was later modified, but they bring up some good points to help with your questions.

“...After a series of analyses, Wolfe et al concluded that a widespread pain index was the best predictor of FM. When this index was excluded from the analysis, key predictors of FM were nonrefreshing sleep, fatigue, cognitive difficulties, and a host of somatic symptoms... there is a glaring omission of well-known mechanistic FM features, such as hyperalgesia, central sensitization, or dysfunctional pain modulation...Also, the somatic symptom list is extremely broad somatic symptoms, and the symptoms are ordered by neither relevance nor predictive value, etc., supposedly contributing equally to FM. In conclusion, whether or not these new criteria are easy to apply by practicing physicians will require empirical testing. Unfortunately, the new criteria are imprecise, ill-defined, lack mechanistic features, and are completely symptom focused…”

This has been my opinion as well. To simply list somatic complaints without further investigation is cause for alarm. The ACR suggests comorbid conditions, tension headache or migraine, digestive problems (i.e. irritable bowel syndrome, gastric reflux) irritable or overactive bladder, pelvic pain, and temporomandibular disorder, causing face or jaw pain, jaw clicking and ringing in the ears. And, they recognize depression or anxiety as a disorder that can accompany fibromyalgia, which can accompany any chronic illness. (Accessed 6-26-2015).  Other things may explain the somatic complaints, such as hypothyroidism, cancer, and much more.

Dr. Katsuhiro Toda (Japan) wrote a letter to the editor or Arthritis Care and Research on the provisional criteria, (Wolfe, 2010) which you can access here. And,  he wrote a letter  tothe editor of the Journal of Rheumatology, The Modification of the American College of Rheumatology Preliminary Diagnostic Criteria for Fibromyalgia Should Be Supplemented and Revised (Wolfe, 2011) of interest. “…In Japan, many physicians have ignored fibromyalgia. Therefore, patients with fibromyalgia are often diagnosed with psychogenic pain or somatoform disorder…”  

You might also be interested in seeing this editorial in the journal “Rheumatology.”  and Dr. Smythe’s article, which also outlines the lack of specificity in the Wolfe criteria.

Dr. Robert Bennett has contributed over 500 papers on fibromyalgia, he is considered an expert, and he led the research for theAlternative Diagnostic Criteria (Bennett, et al., 2014). You can read my blog regarding the criteria, and on my website.

I encourage you to visit my blog, look in the archives and you will see that I have written on MANY topics regarding fibromyalgia.   

Be sure to search PubMed. Connect the dots by searching fibromyalgia along with any one of the comorbid disorders. For instance, a study just published on fibromyalgia and migraine. You will find there has been more than one connection made between fibromyalgia and small fiber neuropathy and fibromyalgia too.

I have found that when one person has a question, someone else will too. Therefore, I will be sharing this information on my blog.

I am attaching a resource list for you and I will include reference to some recent studies that might help you. Good luck and please keep me updated. I would love to see what you come up with for your class.

Best regards, Celeste Cooper

Resources:

Abeles, M* and Abeles, AM. The New Criteria forFibromyalgia: Evolution or Devolution?

Bennett R, Friend R, Marcus D, Bernstein C, Han BK, Yachoui R, Deodar A, Kaell A, Bonafede P, Chino A, Jones K. Criteria for the diagnosis of fibromyalgia: Validation of the modified 2010 preliminary ACR criteria and the development of alternative criteria. Arthritis Care Res (Hoboken). 2014 Feb 4. doi: 10.1002/acr.22301. [Epub ahead of print]

Kroenke K1, Spitzer RL, Williams JB. The PHQ-15: validity of a new measure for evaluating the severity of somatic symptoms. Psychosom Med. 2002 Mar-Apr;64(2):258-66.

Smythe HA. Unhelpful criteria sets for "diagnosis"and "assessment of severity" of fibromyalgia. 

J Rheumatol. 2011 Jun;38(6):975-8. doi: 10.3899/jrheum.110142.

Staud R, Price DD, Robinson ME. The provisional diagnostic criteria for fibromyalgia: one step forward, two steps back: comment on the article by Wolfe et al. Arthritis Care Res (Hoboken). 2010 Nov;62(11):1675-6; author reply 1676-8. doi: 10.1002/acr.20290.

Toda K. Preliminary diagnostic criteria for fibromyalgiashould be partially revised: comment on the article by Wolfe et al. Arthritis Care Res (Hoboken). 2011 Feb;63(2):308-9; author reply 309-10. doi: 10.1002/acr.20358.  

Toda K. The Modification of the American College ofRheumatology Preliminary Diagnostic Criteria for Fibromyalgia Should BeSupplemented and Revised. J Rheumatol 2011;38;2075

Wolfe F, Clauw DJ, Fitzcharles MA, Goldenberg DL, Katz RS, Mease P, Russell AS, Russell IJ, Winfield JB, Yunus MB. The American College of Rheumatology preliminary diagnostic criteria for fibromyalgia and measurement of symptom severity. Arthritis Care Res (Hoboken). 2010 May;62(5):600-10. doi: 10.1002/acr.20140.

Wolfe F1, Clauw DJ, Fitzcharles MA, Goldenberg DL, Häuser W, Katz RS, Mease P, Russell AS, Russell IJ, Winfield JB. Fibromyalgia criteria and severity scales for clinical and epidemiological studies: a modification of the ACR Preliminary Diagnostic Criteria for Fibromyalgia. J Rheumatol. 2011 Jun;38(6):1113-22. doi: 10.3899/jrheum.100594. Epub 2011 Feb 1.

Wolfe F1, Brähler E, Hinz A, Häuser W. Fibromyalgia prevalence, somatic symptom reporting, and the dimensionality of polysymptomatic distress: results from a survey of the general population. Arthritis Care Res (Hoboken). 2013 May;65(5):777-85. doi: 10.1002/acr.21931.

Other:

Antonio R Zamunér MSc, PT*, Meire Forti PT, Carolina P Andrade PT, Mariana Arias Avila PhD, PT andEster da Silva PhD, PT RespiratorySinus Arrhythmia and its Association with Pain in Women with FibromyalgiaSyndrome. Article first published online: 1 JUN 2015 DOI: 10.1111/papr.12321

Caro XJ, Winter EF. Evidence of abnormal epidermal nerve fiber density in fibromyalgia: Clinical and immunologic implications. Arthritis Rheumatol. 2014 Apr 9. doi: 10.1002/art.38662. [Epub ahead of print]

Flodin P1, Martinsen S, Löfgren M, Bileviciute-Ljungar I, Kosek E, Fransson P.

Fibromyalgia Is Associated with Decreased Connectivity Between Pain- and Sensorimotor Brain Areas. Brain Connect. 2014 Aug 7. [Epub ahead of print]

García JJ1, Cidoncha A2, Bote ME3, Hinchado MD3, Ortega E3. Altered profile of chemokines in fibromyalgia patients. Ann Clin Biochem. 2014 Sep;51(Pt 5):576-81. doi: 10.1177/0004563213506413. Epub 2013 Oct 8.

Giannoccaro MP, Donadio V, Incensi A, Avoni P, Liguori R. Small nerve fiber involvement in patients referred for fibromyalgia.  Muscle Nerve. 2014 May;49(5):757-9. doi: 10.1002/mus.24156. Epub 2014 Jan 28. 

Garcia JJ, Ortega E. Soluble fractalkine in the plasma of fibromyalgia patients.

An Acad Bras Cienc. 2014 Dec 9;0:0. [Epub ahead of print]

Inal S1, Inal EE, Okyay GU, Oztürk GT, Oneç K, Güz G. Fibromyalgia and nondipper circadian blood pressure variability. J Clin Rheumatol. 2014 Dec;20(8):422-6. doi: 10.1097/RHU.0000000000000189.

Jones GT1, Atzeni F, Beasley M, Flüß E, Sarzi-Puttini P, Macfarlane GJ. The prevalence of fibromyalgia in the general population - a comparison of the American College of Rheumatology 1990, 2010 and modified 2010 classification criteria. Arthritis Rheumatol. 2014 Oct 16. [Epub ahead of print]

Kosek E1, Altawil R2, Kadetoff D3, Finn A4, Westman M2, Le Maître E2, Andersson M5, Jensen-Urstad M6, Lampa J2. Evidence of different mediators of central inflammation in dysfunctional and inflammatory pain--interleukin-8 infibromyalgia and interleukin-1 β in rheumatoid arthritis. J Neuroimmunol. 2015 Mar 15;280:49-55. doi: 10.1016/j.jneuroim.2015.02.002. Epub 2015 Feb 19.

Kosmidis ML1, Koutsogeorgopoulou L1, Alexopoulos H1, Mamali I1, Vlachoyiannopoulos PG1, Voulgarelis M1, Moutsopoulos HM1, Tzioufas AG1, Dalakas MC2. Reduction of Intraepidermal Nerve Fiber Density (IENFD) in the skin biopsies of patients with fibromyalgia: A controlled study. J Neurol Sci. 2014 Sep 28. pii: S0022-510X(14)00633-9. doi: 10.1016/j.jns.2014.09.035. [Epub ahead of print]

Light AR, Bateman L, Jo D, Hughen RW, Vanhaitsma TA, White AT, Light KC. Gene expression alterations at baseline and following moderate exercise in patients with Chronic Fatigue Syndrome and Fibromyalgia Syndrome. J Intern Med. 2011 May 26. doi: 10.1111/j.1365-2796.2011.02405.x. [Epub ahead of print]

Napadow V1, Harris RE.What has functional connectivity and chemical neuroimaging in fibromyalgia taught us about the mechanismsand management of 'centralized' pain? Arthritis Res Ther. 2014;16(5):425.

Oaklander AL, Herzog ZD, Downs H, Klein MM. Objective evidence that small-fiber polyneuropathy underlies some illnesses currently labeled as fibromyalgia. Pain. 2013 Jun 5. pii: S0304-3959(13)00294-7. doi: 10.1016/j.pain.2013.06.001. [Epub ahead of print]

Olivan-Blázquez B1, Herrera-Mercadal P2, Puebla-Guedea M2, Pérez-Yus MC2, Andrés E3, Fayed N4, Hoyo YL5, Magallon R6, Roca M7, Garcia-Campayo J8. Efficacy of memantine in the treatment of fibromyalgia: a double-blind randomised controlled trial with 6-month follow-up. Pain. 2014 Sep 10. pii: S0304-3959(14)00424-2. doi: 10.1016/j.pain.2014.09.004. [Epub ahead of print]

Riva R1, Mork PJ, Westgaard RH, Okkenhaug Johansen T, Lundberg U.Catecholamines and heart rate in female fibromyalgia patients. .J Psychosom Res. 2012 Jan;72(1):51-7. doi: 10.1016/j.jpsychores.2011.09.010. Epub 2011 Oct 24.

Shmygalev S, Dagtekin O, Gerbershagen HJ, Marcus H, Jübner M, Sabatowski R, Petzke F. Assessing Cognitive and Psychomotor Performance in Patients with Fibromyalgia Syndrome. Pain Ther. 2014 Oct 25. [Epub ahead of print]

Sugimoto C1, Konno T2, Wakao R3, Fujita H1, Fujita H1, Wakao H1. Mucosal-associated invariant T cell is a potential marker to distinguish fibromyalgia syndrome from arthritis.

PLoS One. 2015 Apr 8;10(4):e0121124. doi: 10.1371/journal.pone.0121124. eCollection 2015.

http://www.ncbi.nlm.nih.gov/pubmed/25853812

Tsai PS1, Fan YC, Huang CJ. Fibromyalgia Is Associated With Coronary Heart Disease: A Population-Based Cohort Study. Reg Anesth Pain Med. 2014 Nov 26. [Epub ahead of print]

Nurcan Üçeyler, Susanne Kewenig, Waldemar Kafke, Sarah Kittel-Schneider and Claudia Sommer. Skin cytokine expression in patients with fibromyalgia syndrome is not different from controls. BMC Neurology 2014, 14:185  doi:10.1186/s12883-014-0185-0

Veldhuijzen DS, Sondaal SF, Oosterman JM. Intact cognitive inhibition in patients with fibromyalgia but evidence of declined processing speed.J Pain. 2012 May;13(5):507-15. doi: 10.1016/j.jpain.2012.02.011.

Vij B1, Whipple MO2, Tepper SJ1, Mohabbat AB2, Stillman M1, Vincent A2. Frequency of Migraine Headaches in Patients With Fibromyalgia. Headache. 2015 May 21. doi: 10.1111/head.12590. [Epub ahead of print]

Wallace DJ1, Gavin IM, Karpenko O, Barkhordar F, Gillis BS. Cytokine and chemokine profiles in fibromyalgia, rheumatoid arthritis andsystemic lupus erythematosus: a potentially useful tool in differentialdiagnosis. Rheumatol Int. 2014 Nov 7. [Epub ahead of print] 

 ~ • ~ • ~ • ~ • ~ • ~

"Adversity is only an obstacle if we fail to see opportunity."  

Celeste Cooper, RN

Author—Patient—Health Central Chronic Pain Pro —Advocate

NEW 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. 

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

The Why and the Way Fibromyalgia Studies are Important to You

To get a better understanding of fibromyalgia and the disorders that cluster with them, we need to study them side-by-side so any trends are exposed. Also important is screening for the presence of myofascial pain syndrome (MPS) to assure the participant pool has been identified correctly, because MPS is known as the great imitator.

It’s Not Just Fibro

Many pain disorders have centralization affects, probably most, so while looking at centralization in fibromyalgia; we may need to be more diverse in our thinking. Dr. Robert Bennett and his team 

found that fibromyalgia is often accompanied by another pain disorder. Therefore, while we do experience body-wide pain not directly related to injury or peripheral disease (which indicates centralization-involvement of the brain), and sleep problems, fatigue, and cognitive issues, we also have clustering of disorders. The American College of Rheumatology identifies depression or anxiety, migraine, tension headaches, digestive and bladder problems, pelvic pain, and TMJ. The CDC suggests FM occurs with rheumatoid arthritis (RA), systemic lupus erythematosus (SLE), and ankylosing spondylitis (AS), and it could have a loose underlying genetic factor. Low back pain syndrome is also considered a disorder of centralization, but chronic low back pain patients do not share a clustering of noted disorders. If we compare the two, it suggests that centralization of pain is not the only factor at play in fibromyalgia. It could be, and is suggested in some studies that the amplification of pain by the brain (centralization) is not the only central nervous system involvement.

Investigators are doing some interesting work by looking at fibromyalgia and chronic fatigue syndrome together because they are often associated. Gene expression  might help us understand clustering in a meaningful way. Leaky gut syndrome has been associated with fibromyalgia and a study on ME/CFS and the association and treatment of leaky gut holds some promise. Since these two disorders frequently occur together, this might help us find better treatments. Though the results differ somewhat, studies suggest the need for more research regarding abnormal immune reactions in both FM and ME/CFS (SEID). Interestingly, leaky gut syndrome has been implicated in many autoimmunedisorders and in irritable bowel syndrome,  prevalent in fibromyalgia.

Myofascia and Fibromyalgia: Could There Be an Answer to Your Question?

Any time a person tells me their physician cannot explain neuropathy symptoms (numbness, tingling, sensitivity, weakness, cramping, spasms, etc.), I ask them to learn more about myofascial pain syndrome (MPS).  Myofascial trigger points  are pain generators in many of the comorbid conditions identified in this article. Rheumatologists are internal medicine doctors and many do not understand MPS, how to assess for it, or what treatments work. However, there are physicians and therapists who do.

You will find an article I did at Health Central from an interview with pain specialist, Dr. Karl Hurst-Wicker quite interesting.   It is a necessary read for anyone who wants to understand the role of centralization and peripheral pain generation in fibromyalgia and other unexplained pain.

It’s time to get it right. When funding by unbiased organizations is at an all time low, such as the NIH, we need to make every effort to do it the right way. If you have any of the clustering of symptoms, report them to your doctor and share this blog. Every piece of data counts and so do you.

Resources linked:

American College of Rheumatology, Fibromyalgia

Center for Disease Control, Fibromyalgia

Fasano A. Leaky gut and autoimmune diseases.

Health Central, Fibromyalgia Centralization and Peripheral Myofascial Pain: Interview with Karl Hurst-Wicker, MD

Hyland NP, et. al. Microbiota-host interactions in irritablebowel syndrome: epithelial barrier, immune regulation and brain-gutinteractions. 

Jacob E, et. al. Gene expression factor analysis todifferentiate pathways linked to fibromyalgia, chronic fatigue syndrome, anddepression in a diverse patient sample. 

Kosek E, et. al. Evidence of different mediators of central inflammation indysfunctional and inflammatory pain--interleukin-8 infibromyalgia andinterleukin-1 β in rheumatoid arthritis. 

Maes M and Leunis J. http://www.ncbi.nlm.nih.gov/pubmed/25617880

Myofascial Pain Syndrome at CelesteCooper.com

~ • ~ • ~ • ~ • ~ • ~

"Adversity is only an obstacle if we fail to see opportunity."  

Celeste Cooper, RN

Author—Patient—Health Central Chronic Pain Pro —Advocate

NEW 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. 

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

Germans Suggest Only Medication for Depression is for Fibromyalgia by Celeste Cooper

As Suspected

Using the “Preliminary ACR” diagnostic criteria is taking us down the wrong road. As I was perusing Pub Med, I found many papers, some pro and some con, on this supposed unapproved diagnostic criteria developed by Dr. Frederick Wolfe as principle investigator. (See the letter I received from the American College of Rheumatology, here.)

Interestingly, those studying fibromyalgia in cancer patients do not agree. This is a sampling that speaks to my concerns as drafted in my last blog. Hey! American College of Rheumatology, What’s the Deal?

Dreher T, Häuser W, Schiltenwolf M.

 [Fibromyalgiasyndrome - updated s3 guidelines]. Z Orthop Unfall. 2013 Dec;151(6):603-9. doi: 10.1055/s-0033-1350985. Epub 2013 Dec 17. [Article in German]

According to the modified ACR criteria, 2010, chronic widespread pain and accompanying sleep disturbances and a physical as well as mental state of exhaustion lead to the diagnosis of fibromyalgia syndrome. It is not mandatory to check tender points (ACR 1990 criteria). A graduated treatment approach depending on the severity level of the fibromyalgia syndrome in the individual patient is recommended. Active treatment options (aerobic training, meditative movement therapies, strength training) should be preferred to any drug therapy in the long-term treatment of fibromyalgia. If indicated, amitryptiline or duloxetine may be used to treat accompanying depressive or generalised anxiety disorder. Muscle relaxant medication, non-steroidal anti-inflammatory drugs and strong opioids should be avoided. The multimodal pain therapy considering all psycho-social aspects is a promising treatment option for fibromyalgia syndrome of moderate to high severity. {So it’s back to all in our head. All these treatment modalities would be recommended to anyone with chronic pain, they are not specific to FM. Interestingly, Hauser and Wolfe have done studies together. And hey! these criteria have NOT BEEN APPROVED BY THE ACR. Cc]

Change Perspectives

You will find the following study very interesting from an entirely different perspective.

Tanriverdi O.

Is a new perspectivefor definition and diagnostic criteria of fibromyalgia in early stage cancerpatients necessary? Med Hypotheses. 2014 Apr;82(4):433-6. doi: 10.1016/j.mehy.2014.01.018. Epub 2014 Jan 27.

Fibromyalgia is a most common pain syndrome characterized by the presence of chronic widespread pain and tenderness with manual palpation. However there is no enough data about frequent of fibromyalgia syndrome in patients with cancer. How often FM is being used in oncological practice and how we are managing this case by medical oncologists. Widespread pain index and symptom severity scale are not clear enough in patients with cancer when ACR-2010 diagnostic criteria for FM are considered. In conclusion, there is it may more prevalence of fibromyalgia in patients with cancer. For the diagnosis of fibromyalgia, be new diagnostic criteria for early-stage cancer patients.

Criteria that Affects the Future of Fibromyalgia

As most of you know, I support the Bennett, et al critieria for obvious reasons and they are given in my my blog “The 2013 Alternative Criteria Dr. Robert Bennett, et al. – Interpretation for patients and providers by Celeste Cooper, here.

I would like to see how it performs in the real world. My suspicions are that it will outperform, there will be fewer gray areas, and answer the questions asked by Dr. Tanriverdi.

A Sampling - Collaboration between Dr. Wolfe and Dr. Häuser

Fibromyalgia prevalence, somatic symptom reporting,and the dimensionality of polysymptomatic distress:results from a survey of the general population.

Wolfe F¹, Brähler E, Hinz A, Häuser W.

Arthritis Care Res (Hoboken). 2013 May;65(5):777-85. doi: 10.1002/acr.21931.

See the interview on this paper here. 

Fibromyalgia and physical trauma:the concepts we invent.

 Abstract

CONCLUSIONS:

Despite weak to nonexistent evidence regarding the causal association of trauma and fibromyalgia (FM), literature and court testimony continue to point out the association as if it were a strong and true association. The only data that appear unequivocally to support the notion that trauma causes FM are case reports, cases series, and studies that rely on patients' recall and attribution - very low-quality data that do not constitute scientific evidence. Five research studies have contributed evidence to the FM-trauma association. There is no scientific support for the idea that trauma overall causes FM, and evidence in regard to an effect of motor vehicle accidents on FM is weak or null. In some instances effect may be seen to precede cause. Alternative causal models that propose that trauma causes "stress" that leads to FM are unfalsifiable and unmeasurable.

Wolfe F¹, Häuser W², Walitt BT², Katz RS², Rasker JJ², Russell AS².

J Rheumatol. 2014 Sep;41(9):1737-45. doi: 10.3899/jrheum.140268. Epub 2014 Aug 1.

Symptoms, the nature of fibromyalgia,and diagnostic and statistical manual 5 (DSM-5) defined mental illness inpatients with rheumatoid arthritis and fibromyalgia.

 Abstract

CONCLUSIONS:

All patients with fibromyalgia will satisfy the DSM-5 "A" criterion for distressing somatic symptoms, and most would seem to satisfy DSM-5 "B" criterion because symptom impact is life-disturbing or associated with substantial impairment of function and quality of life. But the "B" designation requires special knowledge that symptoms are "disproportionate" or "excessive," something that is uncertain and controversial. The reliability and validity of DSM-5 criteria in this population is likely to be low.

Wolfe F¹, Walitt BT², Katz RS³, Häuser W⁴.

PLoS One. 2014 Feb 14;9(2):e88740. doi: 10.1371/journal.pone.0088740. eCollection 2014.

~ • ~ • ~ • ~ • ~ • ~

Update 2015

"Adversity is only an obstacle if we fail to see opportunity."  

Celeste Cooper, RN

Author—Patient—Health Central Chronic Pain Pro —Advocate

New Website

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.  

Hey! American College of Rheumatology, What’s the Deal? by Celeste Cooper

I have concerns regarding the response I received from the American College of Rheumatology (ACR) regarding fibromyalgia diagnostics. You can read my inquiry letter here and the ACR response to that letter here. Could it be the ACR is distancing itself from the fibromyalgia the controversy? 

My concerns as follows:

• Some studies show immune dysfunction in fibromyalgia, so could fibromyalgia be treated by immunologists in the future?
• Studies show the brain of the fibromyalgia patient is structurally affected, so should neurologists study and treat fibromyalgia?
• Other research suggests fibromyalgia is indeed an autoimmune disease similar to lupus (SLE). If this is the case, knowing a hallmark symptom is indeed overwhelming muscle and soft tissue pain and anomalies, shouldn't it stay right where it is—under the umbrella of rheumatology?
• What kind of research can we expect in the future, and investigated by whom?
• If the ACR will not endorse any criteria, who will?
• Don't clinicians currently look to the ACR for guidance, as they would look to the American College of Neurology for diagnostic criteria for MS?
• Can we expect consistency if so many are being misdiagnosed with fibromyalgia as we are seeing with the Wolfe, et al criteria? How will a tainted study participant pool yield accurate results?
• Exactly who should be responsible for amending and updating the criteria for diagnosing fibromyalgia to reflect research findings moving forward?

Can we expect research funded by outside sources to be based solely on their intent to prove their product to boost their bottom line? Are we to be okay with having half the participant pool misdiagnosed with fibromyalgia when they actually have a mental health disorder? See the following excerpt from a blog I posted in April 2013, Fibromyalgianess is ALL in Our Head? My Correspondence with DrFrederick Wolfe.

Celeste Cooper (Me): I also have grave concerns over the non-specific disease related symptoms being seen as somatic complaints, in the [Preliminary Proposed Diagnostic Criteria for Fibromyalgia] PPDCFM when they can be linked to specific comorbid disorders and treated appropriately. Marla Silverman and I co-wrote an ADVOCACY PIECE over a year ago regarding our concerns for CFS/ME and FM in the new DSM-5, and now our concerns are born out. I fear it is because the PPDCFM specifically identifies somatic complaints associated with FM without tying them to the comorbid disorders other than IBS and hypothyroidism and that 40% of FM patients (as you report) fall into this DSM-5. This is significant.

 Dr Wolfe’s email response: I don't share that concern or agree with you. However, the physician can certainly chose to exclude symptoms of known diseases if she chooses. That's why we ask physicians to analyze the symptoms and make a judgment.

I am surprised that Arthritis Care and Research would allow the ACR to be named in titles if they indeed want to distance themselves from any criteria, ie. New American College of Rheumatology Criteria for Fibromyalgia: A Twenty-Year Journey by Frederick Wolfe, published in Arthritis Care and Research, May, 2010. This is just one of many examples. Folks are referring to these unapproved criteria as the new ACR criteria in their papers.

Is It Just Me?

Is it just me, or does the ACR letter seem ambiguous? Following are excerpts that factored into my conclusion.

… the ACR did provide provisional endorsement of the 2010 FM diagnostic criteria authored by Dr. Wolfe, et al… but the criteria were not yet validated in an external dataset so full endorsement could not yet be given… Once this external validation work has been done, investigators can then come back to the ACR for consideration for full approval.  

… the ACR has since 2010 established a policy that it will no longer endorse diagnostic criteria. …we recognize that there will be exceptions to any standard criteria that are developed.  Because our endorsement of diagnostic criteria may imply that this is not the case, the ACR has chosen not to endorse newly developed or validated diagnostic criteria now or in the future. [So why are the suggesting that once it is validated by an outside source, it is to be resubmitted for consideration of full approval. CC]

You can read the full letter here.

And what about the Bennett, et. al criteria? No mention, even though it was published in the September, 2014 Arthritis Care and Research?

By the Seat of Their Pants—Post Exfacto

I believe the ACR is flying by the seat of their pants on this one, post exfacto (after the fact). The Wolfe criteria have been criticized for the same reasons I am concerned. The criteria under-performs and identifies patients with FM at a much greater rate than the 1990 criteria. It doesn't take a rocket scientist to figure out this is because they are diagnosing fibromyalgia in patients with somatic symptoms disorder (pdf here). 

A direct quote from the DSM-5:

 "...while medically unexplained symptoms were a key feature for many of the disorders in DSM-IV, an SSD diagnosis does not require that the somatic symptoms are medically unexplained."

Is it starting to make sense as to why some physicians now see fibromyalgianess as a label for psychosomatic illness? 

What can we do?

• Talk to your physician about what criteria he or she used to make your diagnosis.
• Make your providers aware of the stance the ACR has taken.
• Educate your provider on the Bennett Alternative Criteria. (See my blog, which was over-viewed by Dr. Bennett. http://fmcfstriggerpoints.blogspot.com/2014/09/the-2013-alternative-criteria-dr-robert.html#.VAS01fldU6w
• Share this blog with your doctor or his/her nurse. Ask about their opinion and write about it. We all need to hear encouraging words. I am thankful to say, there are those who strongly disagree that fibromyalgia is a psychosomatic illness.
• Write to the American College of Rheumatology, here and to the editor of Arthritis Care and Research, here. 
• Support the researchers with your gratitude for what they do. (You can usually find an email address for the lead investigator in the abstract on PubMed, here. 
• Use the helpful links on my website, here.

~ • ~ • ~ • ~ • ~ • ~

Update 2015

"Adversity is only an obstacle if we fail to see opportunity."  

Celeste Cooper, RN

Author—Patient—Health Central Chronic Pain Pro —Advocate

New Website

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.