Monday, April 29, 2013

May awareness for all neuro-endocrine-immune (NEI), rheumatic and autoimmune disorders.


May awareness for all neuro-endocrine-immune (NEI), rheumatic and autoimmune disorders.

“You can’t change what you don’t acknowledge”
~ Dr Phil McGraw

Raising awareness is instrumental for research funding, improved treatments, and patient outcome.  How many times have we wished there were answers? 

Is it purely coincidence that some of the NEI, rheumatic/arthritic and autoimmune disorders/diseases overlap? That is the $100,000 question.  Let’s make May the month of home runs for all neuro-endocrine-immune, arthritic and autoimmune disorders by recognizing all of them, coming together as one community. It is quite possible that when we find the cause of one, it could provide the master key for many.

“Snowflakes are one of nature’s most fragile things, 
but just look what they can do when they stick together.”
~Vista M. Kelly

(Click on the highlighted topics to access links provided)

What is a neuro-endocrine-immune disorder/disease (NEI/NEID)? It is an umbrella term that takes in several invisible or orphan disorders. These disorders are thought to be affected by the neurological, endocrine, and/or immune system.  Conditions that are frequently thought of as NEI disorders are: Myalgic encephalomyelitis/chronic fatigue syndrome (Now known as ME/CFS), fibromyalgia syndrome (FM), Gulf War Syndrome (GWS), multiple chemical sensitivity (MCS), and chronic Lyme’s Disease

May is also awareness month for all autoimmune disorders some can, and do in many cases, co-occur with some NEI disorders, a double whammy and a two-fold opportunity for the advocate  Autoimmune disorders to be considered for this particular blog (though there are many) include: 
Hashimoto’s thyroiditis,   rheumatoid arthritis (RA), systemic lupus erythematosus (SLE), and ankylosing spondylitis (AS). 
Note: Multiple sclerosis is recognized in March, Sjögren’s and Spondylitis is April, and scleroderma in May.  There are some other conditions not listed here, because they have their own month for raising awareness, However, the still fall under one of these umbrellas. 

The rheumatic conditions that are included in May arthritis awareness are:  
  • Fibromyalgia, (here) 
  • Ehler’s Danlos Syndrome (EDS), (here)
  • Osteoporosis (OP), (here) 
  • Osteoarthritis (OA), (here)
  • Rheumatoid arthritis (RA), (here)  
  • Systemic lupus erythematosus (SLE), (here)  
  • Ankylosing spondylitis (AS), (here)  
  • Gout, (here)  

Though allergy is not classified as an NEI, autoimmune or rheumatic condition, they often overlap with several of the disorders above and May is also allergy awareness month.

Raising awareness requires participation by patients.  We have a duty to help others understand how any one of these disorders affects our lives. As an advocate, I am never certain where or how my words will be heard, but I can assure you, they reach farther than I ever thought possible.  I personally understand we can’t be all things to all people, and we must make difficult decisions when it comes to prioritizing. But, if you are not able to use your own time and talent, and you are able to contribute financially, please find an organization that has helped you, your support can make a difference for all of us. Here are a couple of links on how to advocate (click on the title):
  • Elements of Advocacy (here)
  • Sample Advocacy Letter (here)

A few organizations you can support (Recognizing those that have been instrumental in supporting my advocacy work).
  • Patient Alliance for Neuroendocrineimmune Disorders Organization for Research and Advocacy (here)
  • National Fibromyalgia and Chronic Pain Association (here)
  • Missouri Regional Arthritis Centers (here)
  • The American Academy of Pain Management (here)
  • Pain Alliance to Implement a National Strategy (here)

There are a plethora of organizations that are at your fingertips, make May the month you do a little something extra, even if it is learning a bit more about your illness. Self awareness is the first step. 

Standing together, standing strong, committed to making a difference.
In healing and hope, Celeste


Friday, April 5, 2013

Fibromyalgianess is ALL in Our Head? My Correspondence with Dr Frederick Wolfe



March certainly went out with a bang for me as a patient and advocate.

In his INTERVIEW at Medical.net News, Fibromyalgia: an interview with Dr Frederick Wolfe, a red flag went up when I read that he promotes the work of Simon Wessley and the "research in the UK,"  particularly because of his comments on the FMa/® Test funding, Junk Science – Junk Ethics regarding the study by Behm et al, 2012, where Dr. Wolfe questions bias and funding. I wonder why he doesn't apply the same rules of proposed ethics to Dr. Wessley who has been pounded for his research because it was supported by questionable biased sources, or the funding for the Preliminary Proposed Diagnostic Criteria for Fibromyalgia (PPDCFM), supported by Lilly Research Laboratories?  Also of question to me is that one co-author (not known which one) has received a consulting honorarium from Daiichi Sankyo, a Japanese pharmaceutical company for the Wolfe, Brähler, Hinz, Häuser  study.  While I appreciate his willingness to correspond with me, I am uncertain as to what research Dr Wolfe considers unbiased and question if he interprets information and research to fit with his own conceptual framework. 

JUNK ETHICS-JUNK SCIENCE”  From Dr Wolfe’s FMPerplex Blog
Excerpt from the Behm study (2012):
FM/a® is more than 93 percent sensitive, a sensitivity comparable to the HIV blood test. By comparison the rheumatoid arthritis blood test is only 65 percent sensitive. No medical test is 100 percent accurate.

Dr Wolfe’s comment: “Impossible from your study sample.”

While I acknowledge that I am not a scientist, I am confused as to why Dr. Wolfe believes this is impossible.  With respect to Dr. Wolfe’s opinions, I would ask that he consider the research of others on FM and ME/CFS, after all, “It can’t ALL be bad science.” 

In his own study, relevant to the interview in question (Wolfe, et al, 2013), the researchers use the PHQ-8, a questionnaire of eight somatic complaints that has not been approved and calls it the short version to the PHQ-15 (which has been approved for evaluation of psychiatric somatic disorders).  And this data has been fit into the symptom severity score of the criteria used to screen the participants.  Shouldn't his concerns be self reflected?  

After great deliberation and consideration, I have come to the conclusion that one can construct a study as they wish.  For instance, if one only looks for ducks, they will only look for ducks, even though the ducks are swimming along with a vast array of other aquatic birds.  So is it safe to say, that ducks are the only ones swimming in the pond?  If only one looks for somatic complaints without investigating that they may be tied to a comorbid disorder, it would be impossible to find the symptoms are tied to an overlapping disorder. 

From Wolfe et al, 2013, Fibromyalgia criteria and severity scales for clinical and epidemiological studies: a modification of the ACR Preliminary Diagnostic Criteria for Fibromyalgia.
“Among the limitations of our study was that we did not evaluate the possibility that patients might have had another disorder that could have caused their pain.”

Dr Wolfe appears to be focused on proving “fibromyalgianess,” or “polysymptomatic distress.” You will be interested to see what Dr. Wolfe has to say about this.


RE: March 27, 2013 correspondence with Dr. Frederick Wolfe Professor KU Med, Wichita

Dr Wolfe,

Thank you for letting me know why you are deleting my post. The post was not intended as a promotion of our book, rather, it was in answer to John Q’s question, “How do I know the information we provide is helpful?”  My co-author practices as a doctor in psychology and specializes is chronic pain. Our  philosophies are based on mental, emotional, physical and spiritual balance for living ones best life when struggling with incapacitating daily pain and bears out in the 2011 IOM report.  [Institute of Medicine REPORT “Relieving Pain in America].

The deleted post contained three reviews of our book and many research citations and other books at Fibromyalgia Perplex topic JUNK SCIENCE-JUNK ETHICS.
 Dr Wolfe kindly responded:
Rules about posting and articles:
About comments. We want this blog to be about research and discussions concerning fibromyalgia. To post to this blog you should be a published author, have other academic credentials, or would be welcomed as a discussant in an academic journal....
Your last comment is too much like blurb for your book. In addition, a few references might be OK, but not the long list you provided.

I read your INTERVIEW for your paper Fibromyalgia Prevalence, Somatic Symptom Reporting, and the Dimensionality of Polysymptomatic Distress: Results from a survey of the general population.  
 I do understand that there is no specific code in the ICD-10 (US ICD-9CM) for FM, rather it falls under myalgia and myositis, unspecific, 729.1, which can include any number of disorders. I can only access the abstract, so I would be interested in knowing what data collection tools were used. 

I also have grave concerns over the non-specific disease related symptoms being seen as somatic complaints, in the 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 Wolfes 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 choses. That's why we ask physicians to analyze the symptoms and make a judgement.
Dr Wolfe’s blog response: You misread the ACR criteria when you write the criteria “define symptoms of several autoimmune disorders to be considered.” The criteria refer to symptoms that are present in humans irrespective of disease. There is no clustering between FM and the diseases and syndromes you cite. FM occurs in all diseases and illnesses, but more often in diseases that cause pain or are worrisome. And it is common in osteoarthritis and back pain syndromes, which are not autoimmune at all.
In addition, the criteria do not ask about specific symptoms; they ask about the burden of symptoms. The long list attached to the criteria paper are presented as examples that physicians ‘might’ consider in assessing total burden. 
My response on the blog: http://www.cdc.gov/arthritis/basics/fibromyalgia.htm
My comment here: Dr. Daniel Clauw, a co-author of both the PPDCFM and the Fibromyalgia Criteria and Severity Scales for Clinical and Epidemiological Studies: A modification of the ACR Preliminary Diagnostic Criteria for Fibromyalgia study apparently does not agree. He and his co-authors talk a great deal about comorbid disorder in Improving the Recognition and Diagnosis of Fibromyalgia. (Arnold, et al., 2011.) This prompted the title for my previous blog, “Are We Judged by the Company We Keep?”

I am not at all surprised to find that there are more men affected than originally reported, and agree with your analysis as to why. Women are historically better about taking care of themselves because they are the caregivers. I would have liked to see some statistics on children, which are often overlooked. As for the pain threshold for men vs. women, I have seen studies that go both ways. [Buskila, et al, 2000, Castro-Sánchez, et al, 2012]. No doubt a cultural affect is different in the US [than Germany], because of the male macho culture, but we should consider this so they don’t suffer in silence.  I practiced as a board certified ED/ER nurse for over 20 years and I would rather take care of a female trauma victim than a young white male any day. [I meant this as no disrespect to young white males, this is merely an observation and a response to Dr. Wolfe’s biased response regarding women and pain in his interview, and the identified gender bias on pain in women in the IOM report].

As for traumatic initiating events, they are not limited to emotional trauma; physical trauma is just as significant as is long term chronic conditions, such as, childhood migraine, IBS, etc. There was also a recent study that dismissed this all together. [Gonzalez, et al., 2013]

That brings me to your last comment in the interview, for which I am perplexed, “There is a lot invested in what I would call a psycho-cultural illness.”   There seemed to be an undertow to the interview and the last statement left me flogging like a drowning victim in a vast sea without a life vest. 

I will keep any posts... See  Are we judged by the company we keep? My correspondence with Dr. Frederick Wolfe

(letter continued)
The patient must reach a level of acceptance so they can move forward, and in order to sustain momentum for healthy coping, they must have hope. When the patient-physician relationship is not one of mutual respect it becomes part of the problem.


Respectfully,
Celeste Cooper

Post Comment:

In due respect, Dr Wolfe did allow a few personal comments on his blog which he did not have to do, though my credentials do meet the blog requirements per Dr. Wolfe.  He has been respectful of my comments even though he is not in agreement.

In healing and hope, Celeste
Comments are not to replace medical advice and are purely my opinions.

Resources:

Arnold LM, Clauw DJ, McCarberg BH; FibroCollaborative. Improving the recognition and diagnosis of fibromyalgia. Mayo Clin Proc. 2011 May;86(5):457-64. doi: 10.4065/mcp.2010.0738. Review.

Behm FG, Gavin IM, Karpenko O, Lindgren V, Gaitonde S, Gashkoff PA, Gillis BS. Unique immunologic patterns in fibromyalgia. BMC Clin Pathol. 2012 Dec 17;12(1):25. doi: 10.1186/1472-6890-12-25.
http://www.biomedcentral.com/1472-6890/12/25

Bennett RM. Opinion on preliminary guidelines for the clinical diagnostic criteria for fibromyalgia Practical Pain Management, July/August, 2010, Volume 10 (6) pages 76-79

Buskila, D, Neumann, L, Alhoashle, A, and Abu-Shakra, M. “Fibromyalgia syndrome in men,” Seminars in Arthritis and Rheumatism 30, no. 1 (2000): 47–51.

Castro-Sánchez AM, Matarán-Peñarrocha GA, López-Rodríguez MM, Lara-Palomo IC, Arendt-Nielsen L, Fernández-de-las-Peñas C. Gender differences in pain severity, disability, depression, and widespread pressure pain sensitivity in patients with fibromyalgia syndrome without comorbid conditions. Pain Med. 2012 Dec;13(12):1639-47. doi: 10.1111/j.1526-4637.2012.01523.x. Epub 2012 Nov 21.

Cooper, C and Miller, J. (2010). Integrative Therapies for Fibromyalgia, Chronic Fatigue Syndrome and Myofascial Pain: The Mind-Body Connection. Healing Arts Press: Vermont

Gonzalez B, Baptista TM, Branco JC, Ferreira AS.Fibromyalgia: antecedent life events, disability, and causal attribution. Psychol Health Med. 2013 Jan 17. [Epub ahead of print]

Frederick Wolfe, Daniel J. Clauw, Mary-Ann Fitzcharles,  Don L. Goldenberg, Robert S. Katz, Philip  Mease, Anthony S. Russell, I. Jon Russell, John  B. Winfiled, and Muhammad B. Yunus. The American College of Rheumatology Preliminary Diagnostic Criteria for Fibromyalgia and Measurement of Symptom Severity. Arthritis Care & Research, Vol. 62, No. 5, May 2010, pp 600–610. DOI 10.1002/acr.20140

Fibromyalgia: an INTERVIEW with Dr Frederick Wolfe, University of Kansas School of Medicine. Medical Net News.

Wolfe F, Brähler E, Hinz A, Häuser W. Arthritis Care Res (Hoboken).Fibromyalgia prevalence, somatic symptom reporting, and the dimensionality of polysymptomatic distress: Results from a survey of the general population. 2013 Feb 19. doi: 10.1002/acr.21931. [Epub ahead of print]

Wolfe F, 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.

For more resources see:
Are we judged by the company we keep? My correspondence with Dr. Frederick Wolfe

Tuesday, April 2, 2013

Are we judged by the company we keep? My correspondence with Dr. Frederick Wolfe





RE: March 27, 2013 correspondence with Dr. Frederick Wolfe Professor KU Med, Wichita and lead author of the The American College of Rheumatology Preliminary Diagnostic Criteria for Fibromyalgia and Measurement of Symptom Severity. [Supported by Lilly Research Laboratories.]





  • [Brackets indicate comments which were not part of the original correspondence.]
  • PPDC = The American College of Rheumatology Preliminary Diagnostic Criteria for Fibromyalgia and Measurement of Symptom Severity. 
  • Links are embedded, click on the highlighted areas to access them.
  • Post comments at the end.
  • See notes for explanation of responses.


 “ I will maintain a sense of decorum and respect the right of others to have their own opinions. ” 
~ Celeste Cooper

Dr Wolfe,

Thank you for letting me know why you are deleting my post. The post was not intended as a promotion of our book, rather, it was in answer to John Q’s question, “How do I know the information we provide is helpful?”  My co-author practices as a doctor in psychology and specializes is chronic pain. Our  philosophies are based on mental, emotional, physical and spiritual balance for living ones best life when struggling with incapacitating daily pain and bears out in the 2011 IOM report.  [See notes]

I read your interview for your paper Fibromyalgia Prevalence, Somatic Symptom Reporting, and the Dimensionality of Polysymptomatic Distress: Results from a survey of the general population.  I do understand that there is no specific code in the ICD-10 (US ICD-9CM) for FM, rather it falls under myalgia and myositis, unspecific, 729.1, which can include any number of disorders. I can only access the abstract, so I would be interested in knowing what data collection tools were used. [See notes].

I also have grave concerns over the non-specific disease related symptoms being seen as somatic complaints, in the PPDC, 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 PPDC 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. [See notes]

I am not at all surprised to find that there are more men affected than originally reported, and agree with your analysis as to why. Women are historically better about taking care of themselves because they are the caregivers. I would have liked to see some statistics on children, which are often overlooked. As for the pain threshold for men vs. women, I have seen studies that go both ways. [Buskila, et al, 2000, Castro-Sánchez, et al, 2012]. No doubt a cultural affect is different in the US [than Germany], because of the male macho culture, but we should consider this so they don’t suffer in silence.  I practiced as a board certified ED/ER nurse for over 20 years and I would rather take care of a female trauma victim than a young white male any day. [I meant this as no disrespect to young white males, this is merely an observation and a response to Dr. Wolfe’s biased response regarding women and pain in his interview, and the identified gender bias on pain in women in the IOM report].

As for traumatic initiating events, they are not limited to emotional trauma; physical trauma is just as significant as is long term chronic conditions, such as, childhood migraine, IBS, etc. There was also a recent study that dismissed this all together. [Gonzalez, et al., 2013]

That brings me to your last comment in the interview, for which I am perplexed, “There is a lot invested in what I would call a psycho-cultural illness.”   There seemed to be an undertow to the interview and the last statement left me flogging like a drowning victim in a vast sea without a life vest. 

I will keep any posts I make to specific scientific papers and research as time allows. I am an RN, patient, published author of books and papers, and I am an advocate.  I am considered a fibromyalgia expert at Sharecare, and participate in PAINS,  I am NOT a researcher, and I don't represent myself as one, though as an educator and past author of continuing education programs for the Missouri State Board of Nursing, I am well aware of literature review.  I worked closely with many hospital department heads as hospital-wide educator (past member of ASHET) and was the training center director for the American Heart association and affiliate faculty for BLS and ACLS. My career was full and rewarding until the pain became too severe and my short term memory became severely affected (documented on a forensic neuropsychological exam).  It is significant and the primary reason I do what I do in an effort to retain what I have.  I have experienced migraines, IBS, joint hypermobility and bladder difficulties since childhood, followed by Raynauds, levido reticularus, in young adult hood, and severe cervical radiculopathy since age 35. I have had many sports and on the job injuries resulting in many orthopedic shoulder and knee surgeries. Later I found out I have Hashimoto's thyroiditis and that I never experience stage III or IV (slow wave) sleep progression and moved my legs 180 times in four hours. I do have loss of HRV which is documented.  I would suggest that the appropriate tests must be implemented to explain “somatic complaints” so an investigation of other causes and appropriate treatments can be initiated to improve patient outcome. I have asked myself a thousand times, as you suggest in your interview, which came first, the chicken or the egg? 

The patient must reach a level of acceptance so they can move forward, and in order to sustain momentum for healthy coping, they must have hope. When the patient-physician relationship is not one of mutual respect it becomes part of the problem.

Respectfully,
Celeste Cooper

Post Comments: (Notes following)

In due respect, Dr Wolfe did allow a few personal comments on his blog which he did not have to do.  He has been respectful of my comments even though he is not in agreement.

In his interview at Medical.net News, Fibromyalgia: an interview with Dr Frederick Wolfe, a red flag went up when I read that he promotes the work of Simon Wessley and the "research in the UK,"  particularly because of his comments on the FMa/® Test funding, Junk Science – Junk Ethics regarding the study by Behm et al, 2012, where Dr. Wolfe questions bias and funding. I wonder why he doesn't apply the same rules of proposed ethics to Dr. Wessley who has been pounded for his research because it was supported by questionable biased sources, or the funding for the PDDC, supported by Lilly Research Laboratories?  Also of question to me is that one co-author (not known which one) has received a consulting honorarium from Daiichi Sankyo, a Japanese pharmaceutical company for the Wolfe, Brähler, Hinz, Häuser  study.  While I appreciate his willingness to correspond with me, I am uncertain as to what research Dr Wolfe considers unbiased and question if he interprets information and research to fit with his own conceptual framework. 

Of concern, is that many studies are funded by parties interested in promoting a particular product or opinion, even some of those in the resources for this blog.  We need unbiased research funding. We should support those that support this type of research.

 “Junk Ethics-Junk Science” Excerpt from the Behm study:  FM/a® is more than 93 percent sensitive, a sensitivity comparable to the HIV blood test. By comparison the rheumatoid arthritis blood test is only 65 percent sensitive. No medical test is 100 percent accurate. Dr Wolfe’s comment: “Impossible from your study sample.” While I acknowledge that I am not a scientist, I am confused as to why Dr. Wolfe believes this is impossible.  With respect to Dr. Wolfe’s opinions, I would ask that he consider the research of others on FM and ME/CFS.  My conclusions are “It can’t ALL be bad science.”

In healing and hope, Celeste
Comments are not to replace medical advice and are purely my opinions.

NOTES:

Deleted Post:

The deleted post contained three reviews of our book and many research citations and other books as an answer to a posted question to me by John Q. at Fibromyalgia Perplex topic Junk Science – Junk Ethics.

Dr Wolfe kindly responded:

Rules about posting and articles:

About comments. We want this blog to be about research and discussions concerning fibromyalgia. To post to this blog you should be a published author, have other academic credentials, or would be welcomed as a discussant in an academic journal. We make these somewhat arbitrary rules to try to exclude the general, non-scientific public. We welcome comments by all scientists and social scientists, not just those who are physicians. This blog is moderated, meaning that the editors decide what will appear. In general, we will not censor on-topic scientific posts provided authors meet the above guidelines. If you don’t fit our guidelines and think you have something to contribute, send the editors an email.


Your last comment is too much like blurb for your book. In addition, a few references might be OK, but not the long list you provided.


Study Data:

Dr Wolfe kindly provided me the published article in Arthritis and Research, Vol. 65, No. 5, May 2013, pp 000–000. DOI 10.1002/acr. Excerpt as follows:

Design and subjects.
A representative sample of the German general population was selected with the assistance of a demographic consulting company (USUMA…)… Data collection … May and June 2012. A first attempt was made at 4,448 addresses, and 2,515 persons (56.7%) participated fully. Reasons for nonparticipation included the following: 3 unsuccessful attempts to contact the household or selected household member (12.9%), the household or selected household member declined to participate (13.7%), or the household member was on a holiday break (1.1%). Furthermore, 0.5% of the participants were excluded because they were not able to follow the interview due to illness, as were 3.3% who refused to finish the interview. To study the adult population, we excluded subjects who were #18 years of age. Three subjects who had missing data for the fibromyalgia diagnosis variables were also excluded. After these exclusions, a total of 2,445 subjects were included in the analysis.

PPDC identifies somatic complaints associated with FM without tying them to the comorbid disorders:

Dr Wolfes 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 choses. That's why we ask physicians to analyze the symptoms and make a judgement.

Dr Wolfe’s blog response:
You misread the ACR criteria when you write the criteria “define symptoms of several autoimmune disorders to be considered.” The criteria refer to symptoms that are present in humans irrespective of disease. There is no clustering between FM and the diseases and syndromes you cite. FM occurs in all diseases and illnesses, but more often in diseases that cause pain or are worrisome. And it is common in osteoarthritis and back pain syndromes, which are not autoimmune at all.

In addition, the criteria do not ask about specific symptoms; they ask about the burden of symptoms. The long list attached to the criteria paper are presented as examples that physicians ‘might’ consider in assessing total burden. 

My response: http://www.cdc.gov/arthritis/basics/fibromyalgia.htm

Resources:

Aaron, L. A. Burke, M. M., and Buchwald, D. (2000, January 24). Overlapping conditions amoung patients with chronic fatigue syndrome, fibromyalgia and temporomadibular disorder. Archives of Internal Medicine, 160(15), pp. 2398-2401.

Alonso-Blanco C, Fernández-de-Las-Peas C, de-la-Llave-Rincón AI et al. 2012. Characteristics of referred muscle pain to the head from active trigger points in women with myofascial temporomandibular pain and fibromyalgia syndrome. J Headache Pain. [Aug 31 Epub ahead of print]. 

Bazzichi L, Rossi A, Zirafa C, Monzani F, Tognini S, Dardano A, Santini F, Tonacchera M, De Servi M, Giacomelli C, De Feo F, Doveri M, Massimetti G, Bombardieri S. Thyroid autoimmunity may represent a predisposition for the development of fibromyalgia?  Rheumatology International, Nov 18, 2010.

Behm FG, Gavin IM, Karpenko O, Lindgren V, Gaitonde S, Gashkoff PA, Gillis BS. Unique immunologic patterns in fibromyalgia. BMC Clin Pathol. 2012 Dec 17;12(1):25. doi: 10.1186/1472-6890-12-25.
http://www.biomedcentral.com/1472-6890/12/25

Bennett RM. Opinion on preliminary guidelines for the clinical diagnostic criteria for fibromyalgia. Practical Pain Management, July/August, 2010, Volume 10 (6) pages 76-79 

Berstad A, Undseth R, Lind R, Valeur J. Functional bowel symptoms, fibromyalgia and fatigue: A food-induced triad? Scand J Gastroenterol. 2012 May 18. [Epub ahead of print]

Bullones Rodríguez MÁ, Afari N, Buchwald DS; Evidence for overlap between urological and nonurological unexplained clinical conditions. J Urol. 2013 Jan;189(1 Suppl):S66-74. doi: 10.1016/j.juro.2012.11.019.

Buskila, D, Neumann, L, Alhoashle, A, and Abu-Shakra, M. “Fibromyalgia syndrome in men,” Seminars in Arthritis and Rheumatism 30, no. 1 (2000): 47–51.

Cakit BD, Taskin S, Nacir B, Unlu I, Genc H, Erdem HR. Comorbidity of fibromyalgia and cervical myofascial pain syndrome. Clin Rheumatol. 2010 Apr;29(4):405-11.

Castro-Sánchez AM, Matarán-Peñarrocha GA, López-Rodríguez MM, Lara-Palomo IC, Arendt-Nielsen L, Fernández-de-las-Peñas C. Gender differences in pain severity, disability, depression, and widespread pressure pain sensitivity in patients with fibromyalgia syndrome without comorbid conditions. Pain Med. 2012 Dec;13(12):1639-47. doi: 10.1111/j.1526-4637.2012.01523.x. Epub 2012 Nov 21.

Chung JH, Kim SA, Choi BY, Lee HS, Lee SW, Kim YT, Lee TY, Moon HS. The association between overactive bladder and fibromyalgia syndrome: A community survey. Neurourol Urodyn. 2012 Jun 5. doi: 10.1002/nau.22277. [Epub ahead of print

Cooper, C and Miller, J. (2010). Integrative Therapies for Fibromyalgia, Chronic Fatigue Syndrome and Myofascial Pain: The Mind-Body Connection. Healing Arts Press: Vermont

Dardano A, Bazzzichi L, Bombardieri S, Monzani F. Symptoms in euthyroid Hashimoto's thyroiditis: is there a role for autoimmunity itself? Thyroid. 2012 Mar;22(3):334-5. Epub 2012 Feb 2.

Doğru MT, Aydin G, Tosun A, Keleş I, Güneri M, Arslan A, Ebinç H, Orkun S. Correlations between autonomic dysfunction and circadian changes and arrhythmia prevalence in women with fibromyalgia syndrome. Anadolu Kardiyol Derg. 2009 Apr;9(2):110-7.

Evans RW, de Tommaso M. 2011. Migraine and fibromyalgia. Headache. 51(2):295-299

Fraga BP, Santos EB, Farias Neto JP, Macieira JC, Quintans LJ Jr, Onofre AS, De Santana JM, Martins-Filho PR, Bonjardim LR. Signs and symptoms of temporomandibular dysfunction in fibromyalgic patients. J Craniofac Surg. 2012 Mar;23(2):615-8

Frieri M, Argyriou A. Is there a relationship between fibromyalgia and rhinitis? Allergy Asthma Proc. 2012 Nov-Dec;33(6):443-9. doi: 10.2500/aap.2012.33.3596.

Furlan R, Colombo S, Perego F, Atzeni F, Diana A, Barbic F, Porta A, Pace F, Malliani A, Sarzi-Puttini P.  Abnormalities of cardiovascular neural control and reduced orthostatic tolerance in patients with primary fibromyalgia. J Rheumatol. 2005 Sep;32(9):1787-93.

Ge HY. Prevalence of myofascial trigger points in fibromyalgia: the overlap of two common problems. Curr Pain Headache Rep. 2010 Oct;14(5):339-45.  

Goebel A, Buhner S, Schedel R, Lochs H, Sprotte G. Altered intestinal permeability in patients with primary fibromyalgia and in patients with complex regional pain syndrome. Rheumatology (Oxford). 2008 Aug;47(8):1223-7. doi: 10.1093/rheumatology/ken140. Epub 2008 Jun 7.

Gonzalez B, Baptista TM, Branco JC, Ferreira AS. Fibromyalgia: antecedent life events, disability, and causal attribution. Psychol Health Med. 2013 Jan 17. [Epub ahead of print]

Hermanns-Lê T, Piérard GE, Angenot P. [Fibromyalgia: an unrecognized Ehlers-Danlos syndrome hypermobile type?] Rev Med Liege. 2013 Jan;68(1):22-4.

Holman AJ. Postional cervical spinal cord compression and fibromyalgia: a novel comorbidity with important diagnostic and treatment implications. J Pain. 2008 Jul;9(7):613-22. Epub 2008 May 22.

Hongling Nie, Pascal Madeleine, Bente Danneskiold-Samsoe, Thoms Graven-Nielsen, Lars Arendt-Nielsen. Contribution of the local and referred pain from active myofascial trigger points in fibromyalgia syndrome. 2009. Pain.147; 233-240

Iannuccelli C. Fibromyalgia showed greater association with lupus than Sjögren’s syndrome. Clin Exp Rheumatol. 2012;30:S117-S121.

Kashikar-Zuck S, Zafar M, Barnett KA et al. 2013. Quality of life and emotional functioning in youth with chronic migraine and juvenile fibromyalgia. Clin J Pain. [Feb 26 Epub ahead of print]. 

Kim SE, Chang L. Overlap between functional GI disorders and other functional syndromes: what are the underlying mechanisms? Neurogastroenterol Motil. 2012 Oct;24(10):895-913. doi: 10.1111/j.1365-2982.2012.01993.x. Epub 2012 Aug 2.

Kindler LL, Bennett RM, Jones KD. Central sensitivity syndromes: mounting pathophysiologic evidence to link fibromyalgia with other common chronic pain disorders. Pain Manag Nurs. 2011 Mar;12(1):15-24.

Kingsley JD. Autonomic dysfunction in women with fibromyalgia. Arthritis Res Ther. 2012 Feb 20;14(1):103. [Epub ahead of print]

Kucuksen S, Genc E, Yilmaz H et al. 2013. The prevalence of fibromyalgia and its relation with headache characteristics in episodic migraine. Clin Rheumatol. [Feb 27 Epub ahead of print]. 

Melikoglu M, Melikoglu MA. 2012. The prevalence of fibromyalgia in patients with Behçet's disease and its relation with disease activity. Rheumatol Int. [Sep 28 Epub ahead of print]. [Behçet's disease  is a rare immune-mediated systemic vasculitis.Cc]

Lerma C, Martinez A, Ruiz N, Vargas A, Infante O, Martinez-Lavin M. Nocturnal heart rate variability parameters as potential fibromyalgia biomarker: correlation with symptoms severity. Arthritis Res Ther. 2011 Nov 16;13(6):R185. [Epub ahead of print]

Mork P, Nilsson J, Lorås H, Riva R, Lundberg U, Westgaard R. Heart rate variability in fibromyalgia patients and healthy controls during non-REM and REM sleep: a case-control study. Scand J Rheumatol. 2013 Feb 20. [Epub ahead of print]

Pay S, Calgüneri M, Calişkaner Z, Dinç A, Apraş S, Ertenli I, Kiraz S, Cobankara V. Evaluation of vascular injury with proinflammatory cytokines, thrombomodulin and fibronectin in patients with primary fibromyalgia. Nagoya J Med Sci. 2000 Nov;63(3-4):115-22.

da Cunha Ribeiro RP, Roschel H, Artioli GG, Dassouki T, Perandini LA, Calich AL, de Sá Pinto AL, Lima FR, Bonfá E, Gualano B. Cardiac autonomic impairment and chronotropic incompetence in fibromyalgia.  Arthritis Res Ther. 2011 Nov 18;13(6):R190. [Epub ahead of print]  

Roussou E, Ciurtin C. 2012. Clinical overlap between fibromyalgia tender points and enthesitis sites in patients with spondyloarthritis who present with inflammatory back pain. Clin Exp Rheumatol. [Aug 30 Epub ahead of print]. 

da Silva LA, Kazyiama HH, de Siqueira JT, Teixeira MJ, de Siqueira SR. High prevalence of orofacial complaints in patients with fibromyalgia: a case-control study. Oral Surg Oral Med Oral Pathol Oral Radiol. 2012 Aug 17. [Epub ahead of print] 

Staud, R. Evidence for Shared Pain Mechanisms in Osteoarthritis, Low Back Pain, and Fibromyalgia. Curr Rheumatol Rep. 2011 Aug 11. [Epub ahead of print]

Staud R. Heart rate variability as a biomarker of fibromyalgia syndrome. Fut Rheumatol. 2008 Oct 1;3(5):475-483.

Suk J, Lee J, Kim J. Association between Thyroid Autoimmunity and Fibromyalgia. Exp Clin Endocrinol Diabetes. 2012 Apr 27. [Epub ahead of print] 

Suskind AM, Berry SH, Suttorp MJ, Elliott MN, Hays RD, Ewing BA, Clemens JQ. Health-related quality of life in patients with interstitial cystitis/bladder pain syndrome and frequently associated comorbidities. Qual Life Res. 2012 Oct 7. [Epub ahead of print]

Tang, S, Calkins, H and Petri, M. Neurally mediated hypotension in systemic lupus erythematosus patients with fibromyalgia. Rheumatology (Oxford) May 1, 2004 43(5):609-614

Uludag M, Kaparov A, Sari H, Ornek NI, Gün K, Suzen S, Akarirmak U. Osteopoikilosis associated with fibromyalgia and active myofascial trigger point in upper trapezius muscles. J Back Musculoskelet Rehabil. 2011;24(4):257-61.

Frederick Wolfe, Daniel J. Clauw, Mary-Ann Fitzcharles,  Don L. Goldenberg, Robert S. Katz, Philip  Mease, Anthony S. Russell, I. Jon Russell, John  B. Winfiled, and Muhammad B. Yunus. The American College of Rheumatology Preliminary Diagnostic Criteria for Fibromyalgia and Measurement of Symptom Severity. Arthritis Care & Research, Vol. 62, No. 5, May 2010, pp 600–610. DOI 10.1002/acr.20140

Fibromyalgia: an interview with Dr Frederick Wolfe, University of Kansas School of Medicine. Medical Net News. 
 (acceessed 3-27-13).

Wolfe F, 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 Feb 19. doi: 10.1002/acr.21931. [Epub ahead of print]


Monday, April 1, 2013

AFFIRMATION CONTEST has a WINNER!


A huge thanks you to all who participated and supported the contest.  The almost 400 votes are in and the winner is #2:

"Be kind to yourself. Respect who you are.
 Walk in the light of your fearlessness. "©
~ Clarissa Shepherd, author, and founder and moderator of Facebook support group Fellow Travelers

Runners up in no particular order:

“Step by step, I'm following my path towards optimal health with grace, gratitude and grit.”©
~Eva Adams 2013

“Bring on the day so I can make the most of the moments. 
Some may hurt but others will take your breath away. “©
~Sharon Stapf 2013


As the winner Clarissa will receive:

•  A copy of Broken Body, Wounded Spirit: Balancing the See Saw of Chronic Pain,FALL Devotions.
•  Her affirmation in print in the next edition, Broken Body, Wounded Spirit: Balancing the See Saw of Chronic Pain, SUMMER Devotions.

Affirmation and famous quotes have inspired me on my own personal journey with chronic pain and illness, and I hope this contest has inspired all of you.  Thank you again. 

In healing and hope, Celeste

Celeste's Website

Celeste's Website
Click on the picture