Saturday, May 31, 2014

Fibromyalgia - The Past, Present, and Future. Part II — The Present and Future by Celeste Cooper


           
If you missed "Fibromyalgia — The Past, Present, and Future:
Part I —The Past"
 
You can read it HERE!

 
*If you wish to read more on specific topics, there are links to Celeste's website
and blogs that will help give you more in-depth information
and other citations and links to follow.
Just click on the highlighted links.



The Present
                       
According to the National Fibromyalgia and Chronic Pain Association (NFMCPA),  approximately ten million Americans have been diagnosed with fibromyalgia. There is no doubt that awareness has increased over the past few years. Could it be that the FDA approving medications for fibromyalgia and the constant media attention for these medications has done this? Read fellow advocate Cort Johnson's thoughts here, and the results of a survey done by the National Pain Report here.

Even though these medications may not be what we were hoping would work, there is no denying that media attention has raised awareness, despite advertisement for boosting pharmaceutical companies bottom line. Think about the credibility fibromyalgia would have if our families, friends, peers, and even doctors knew there is scientific proof that fibromyalgia is biological syndrome and that it's not all in our heads?

It's coming. Never give up hope!



 
biomarker – a test done on the body that indicates a specific physical trait used to assess the effects or evolution of a disease or disorder.
   
Widely accepted primary symptoms are:

  • Body-wide pain — no longer confined to 18 tender points
  • Non-restorative sleep — not feeling rested even when eight hours are achieved
  • Malaise—lack of zest or energy, fatigue
  • Cognitive deficit —difficulty finding words, adult onset dyslexia, and short term memory problems.


According to the 2013 AltCr (Bennett et al., 2014) other things to consider for diagnosis include;  stiffness and tenderness to touch; balance problems; depression and anxiety; sensitivity to lights, odors, and cold; and symptoms lasting three months or more.

  

I feel very fortunate to have lived long enough to see the FM/a blood test developed, tested, and researched well. Thanks to the determination of the scientists, we now have a biomarker that shows "Unique Immunologic Patterns in Fibromyalgia." (Behm, et al.) This should come as no surprise because of the comorbid disorders.  
   
comorbid  –  pertaining to two or more conditions that occur together more frequently than others.
   
Let's talk a bit about comorbid disorders. Irritable bowel syndrome, widely recognized as comorbid to FM is thought by many to have an immune component and that it is an organic disorder, meaning there is a biological reason that the bowel function is disrupted. Irritable bladder, interstitial cystitis, and other pelvic disorders have been closely associated with fibromyalgia, some autoimmune. Leaky gut syndrome (LGS) has been associated with FM, and we now know LGS plays a role in many autoimmune diseases, even psoriasis.

According to both the National Institute of Health  and the Center for Disease Control  fibromyalgia occurs as a comorbid disorder in rheumatoid arthritis, systemic lupus erythematosus,  and ankylosing spondylosis. These are autoimmune diseases. In addition, did you know that osteoarthritis (thought by some to have a connection to FM) could have an immune component? Research also continues to suggest that thyroid disease  is prevalent in a subset of fibromyalgia patients.

Included in the Wolfe, et al criteria (2010) was a list of  "polysymptomatic and fibromyalgianess" complaints. Though it may not have been intentional, consideration of symptoms without investigating other causes, could suggest that fibromyalgia is a psychosomatic mental illness (now defined in the DSM-5 as somatic symptom disorder). Because of this, it is possible we will not get the tests, diagnosis, and treatments we need. So if you have unusual symptoms that don't respond to treatments or medications, be persistent. If you doctor is not receptive, get a second opinion.
 
Also not a surprise is that the sympathetic (SNS) and the autonomic nervous (ANS) systems may be in on the action. This could explain the involvement of Raynaud's,  IBS,  and irritable bladder.  Raynaud's is thought to occur due to SNS disruption, and both IBS and irritable bladder are thought to have an immune AND sympathetic system involvement.  For all the migraineurs with fibromyalgia, you will be interested to know that migraine may be due a sympathetic nervous system that has gone haywire.

Fibromyalgia has an effect on the autonomic nervous system as evidenced by research on post exertional malaise, postural orthostatic tachycardia syndrome (thought by some to also have an immune component, Li, et al.), and neurally mediated hypotension,  also seen in myalgic encephalomyelitis/chronic fatigue syndrome  (ME/CFS). 
 
All these things might explain why the trigger points of myofascial pain syndrome, a peripheral pain generator in many chronic pain conditions, don't sustain treatment in fibromyalgia patients.
 
The following excerpt is from correspondence I had with Dr. Frederick Wolfe regarding the omission of linking comorbid conditions in the Preliminary Proposed Diagnostic Criteria. 
 
Dr Wolfe stated: 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.  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.  
Full article here.
   
I take issue with Dr. Wolfe's remarks because fibromyalgia is being used interchangeably with the term centralization/amplification of pain. If this is true, then Dr. Wolfe's comment makes perfect sense. However, in my opinion, fibromyalgia is NOT synonymous with centralization when centralization is considered as amplification of pain. While there is a centralization/amplification component to FM, just like there is with all chronic pain conditions, not all persons who experience chronic pain have primary symptoms of fibromyalgia or the comorbid disorders that have been identified in other research, research that Dr. Wolfe and some others fail to recognize. Also frequently neglected is the presence of myofascial pain syndrome in most, if not all chronic pain disorders. We should not be confused regarding the differences between FM and MPS. (You can watch my interview with Anthony Castelli from my website here. And, you can take a look at the plethora of research to back up my thoughts here. This is purely my opinion, and it could change, but bring me the proof.

Both the NIH and the CDC agree that fibromyalgia is prevalent in certain autoimmune disorders. You can read more on my thoughts on why Dr. Wolfe and his peers are missing important pieces to the puzzle in my blog "A Comprehensive Review on the Proposed and Modified Diagnostics for Fibromyalgia."   
 
The proof is in the pudding


Dr. Wolfe once rebuffed the research of Dr. Albrecht, et al in his blog, Junk Science, Junk Ethics. It will be interesting to see the response to the follow up study on the Behm study, which has been done and is to be published. This follow up study shows the FM/a test is 93% effective in distinguishing fibromyalgia independent of other comparative autoimmune disorders. More importantly, the NFMCPA tells us the NIH will be using the FM/a test  in fibromyalgia studies to verify diagnosis. This means that our future holds the distinction of having a biomarker, just like the other immune disorders that frequently occur with it.
 
Doctors Alan Light and Kathleen Light have been leading studies that show there is a specific "Gene Expression Involving Stress and Distress Pathways in Fibromyalgia with and without Comorbid Chronic Fatigue Syndrome." They believe they are close to also having a biomarker for fibromyalgia, and I understand that Dr. Robert Bennett is doing research along these same lines. 

Therefore, it is with great delight that I say:

"2014 is the year that has proved without a doubt  FIBROMYALGIA IS REAL!"
 
 
What does this mean for the future?
 
In the past, there was no biomarker, nor was there advancing research on genetic expression. 

We can expect:

  • Fibromyalgia will no longer be used as a wastebasket diagnosis (yes, it still happens).
  • We won't have to endure publicized terms such as "Fibromyalgianess."  
  • Improvement of meeting the guidelines for disability benefits.
  • Better tracking by the World Health Organization.
  • Better funding for research into the biology of fibromyalgia.
  • Target rich treatments.

 


While  having a biomarker is important until we find a cure, we will still need to use approaches for coping with chronic illness and pain. Many disorders have biomarkers, such as MS, SLE, RA, diabetes, etc., but these patients still struggle to maintain, and many of them are also fibromyalgia patients. In every case, patient outcome is based on learning to live life the best we can despite illness.
 
My suspicion is that once we understand the pathophysiology behind autoimmune disorders, we will be able to make great strides for prevention. It's not just about us, it's about future generations.

That's what gives us courage, determination, and hope.
 
 

Resources
 
Ahmad J1, Tagoe CE.  Fibromyalgia and chronic widespread pain in autoimmune thyroid disease. Clin Rheumatol. 2014 Jan 18. [Epub ahead of print]
 
Alonso-Blanco C, Fernández-de-las-Peñas C, Morales-Cabezas M, Zarco-Moreno P, Ge HY, Florez-García M. Multiple active myofascial trigger point reproduce the overall spontaneous pain pattern in women with fibromyalgia and are related to widespread mechanical hypersensitivity. Clin J Pain. 2011 Jun;27(5):405-13.
 
American Psychiatric Association (APA) - DSM-5. Characteristics of Somatic Symptom Disorder.
 http://www.dsm5.org/Documents/Somatic%20Symptom%20Disorder%20Fact%20Sheet.pdf (Accessed 5-30-2014).

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.
 
Bennett RM, Goldenberg DL. 2011. Fibromyalgia, myofascial pain, tender points and trigger points: splitting or lumping? Arthritis Res Ther. 2011 Jun 30;13(3):117.
 
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]
 
H C Chandola and Arunangshu Chakraborty. Fibromyalgia and Myofascial Pain Syndrome-A Dilemma. Indian J Anaesth. Oct 2009; 53(5): 575–581.PMCID: PMC2900090
 
Cho KI1, Lee JH. The impact of thyroid autoimmunity on arterial stiffness in postmenopausal patients with fibromyalgia. Int J Rheum Dis. 2014 Jan 11. doi: 10.1111/1756-185X.12257. [Epub ahead of print]
 
Cooper C and Miller J. (2010). Integrative Therapies for Fibromyalgia, Chronic Fatigue Syndrome, and Myofascial Pain: The Mind-Body Connection. Vermont: Healing Arts Press.
 
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.
 
Fernandez-de-Las-Penas C, Penacoba-Puente C, Cigaran-Mendez M et al. Has catechol-O-methyltransferase genotype (Val158Met) an influence on endocrine, sympathetic nervous and humoral immune systems in women with fibromyalgia syndrome? Clin J Pain. 2014.30(3):199-204.
 
Giovanni Barbara,corresponding author Cesare Cremon, Giovanni Carini, Lara Bellacosa, Lisa Zecchi, Roberto De Giorgio, Roberto Corinaldesi, and Vincenzo Stanghellini. The Immune System in Irritable Bowel Syndrome J Neurogastroenterol Motil. Oct 2011; 17(4): 349–359. Published online Oct 31, 2011. doi:  10.5056/jnm.2011.17.4.349 PMCID: PMC3228974
 
Kitagawa Y, Kimura K, Yoshida S. Spectral analysis of heart rate variability during trigger point acupuncture. Acupunct Med. 2014. [Mar 7 Epub ahead of print.]
 
Küçükşen S, Genç E, Yılmaz H, Sallı A, Gezer IA, Karahan AY, Salbaş E, Cingöz HT, Nas O, Uğurlu H. The prevalence of fibromyalgia and its relation with headache characteristics in episodic migraine. Clin Rheumatol. 2013 Feb 27.
 
Lepus CM1, Song JJ, Wang Q, Wagner CA, Lindstrom TM, Chu CR, Sokolove J, Leung LL, Robinson WH. Brief report: carboxypeptidase B serves as a protective mediator in osteoarthritis. Arthritis Rheumatol. 2014 Jan;66(1):101-6. doi: 10.1002/art.38213.
 
Li H1, Yu X, Liles C, Khan M, Vanderlinde-Wood M, Galloway A, Zillner C, Benbrook A, Reim S, Collier D, Hill MA, Raj SR, Okamoto LE, Cunningham MW, Aston CE, Kem DC.
Autoimmune basis for postural tachycardia syndrome. J Am Heart Assoc. 2014 Feb 26;3(1):e000755. doi: 10.1161/JAHA.113.000755.
 
Light KC, White AT, Tadler S, Iacob E, Light AR. Genetics and Gene Expression Involving Stress and Distress Pathways in Fibromyalgia with and without Comorbid Chronic Fatigue Syndrome.  Pain Res Treat. 2012;2012:427869. Epub 2011 Sep 29.
 
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]
 
Doctors Alan Light and Kathleen Light from the Anesthesiology Department at the University of Utah. Sufferers of chronic fatigue, fibromyalgia have hope in new diagnostic tool.
 
Magdy El-Salhy, Doris Gundersen, Odd Helge Gilja, Jan Gunnar Hatlebakk, and Trygve Hausken Is irritable bowel syndrome an organic disorder? World J Gastroenterol. Jan 14, 2014; 20(2): 384–400. Published online Jan 14, 2014. doi:  10.3748/wjg.v20.i2.384
PMCID: PMC3923014
 
Martínez-Martínez LA1, Mora T, Vargas A, Fuentes-Iniestra M, Martínez-Lavín M. Sympathetic nervous system dysfunction in fibromyalgia, chronic fatigue syndrome, irritable bowel syndrome, and interstitial cystitis: a review of case-control studies. J Clin Rheumatol. 2014 Apr;20(3):146-50. doi: 10.1097/RHU.0000000000000089.
Peroutka SJ. Migraine: a chronic sympathetic nervous system disorder.Headache. 2004 Jan;44(1):53-64.
 
Wolfe F, Walitt BT, Katz RS et al. Symptoms, the nature of fibromyalgia, and diagnostic and statistical Manual 5 (DSM-5) defined mental illness in patients with rheumatoid arthritis and fibromyalgia. PLoS One. 2014. 9(2):e88740.
 
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 F1, Michaud K, Busch RE, Katz RS, Rasker JJ, Shahouri SH, Shaver TS, Wang S, Walitt BT, Häuser W. Polysymptomatic Distress in Patients with Rheumatoid Arthritis: Understanding disproportionate response and its spectrum. Arthritis Care Res (Hoboken). 2014 Feb 4. doi: 10.1002/acr.22300. [Epub ahead of print]

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.
 
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 38;1113-1122, 2011.

Frederick Wolfe. Fibromyalgianess. Arthritis Care and Research. DOI: 10.1002/art.24553 Article first published online: 28 MAY 2009
http://onlinelibrary.wiley.com/doi/10.1002/art.24553/full
  
Yun DJ, Choi HN, Oh GS. 2013. A case of postural orthostatic tachycardia syndrome associated with migraine and fibromyalgia. Korean J Pain. 26(3):303-306.


"Adversity is only an obstacle if we fail to see opportunity."  Celeste Cooper, RN
Books:
Read about Celeste and access to her books at Author Central here
Broken Body, Wounded Spirit: Balancing the See Saw of Chronic Pain [Four book series]
Integrative Therapies for Fibromyalgia, Chronic Fatigue Syndrome, and Myofascial Pain 

Website: http://www.TheseThree.com

~ • ~ • ~ • ~ • ~ • ~

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


Saturday, May 24, 2014

Fibromyalgia - The Past, Present, and Future. Part I - The Past by Celeste Cooper


History
Fibromyalgia is not a new syndrome or disorder. It has been officially recognized by the health care industry for the past two decades, and has been known to exist for more than a hundred years. Symptoms of what we know today as FM were first described in the seventeen hundreds, and the disorder was first observed and documented by British surgeon William Balfour in 1816. In 1904 the same collection of symptoms was recognized by another British fibromyalgia pioneer, Sir William Gowers, who described chronic soft tissue syndromes as fibromyocitis...


.. Later in the nineteen hundreds the term fibrositis appeared in North American rheumatology textbooks. In the 1940s fibromyalgia was thought to be associated with depression and stress, and later, in 1975, Harvey Moldofsky and Hugh Smythe, both Canadian medical doctors, noted sleep abnormalities and fatigue in patients with diffuse musculoskeletal tender points. They also believed that fatigue could occur due to a disruption in an individual’s normal circadian rhythm, regardless of normal sleep duration. Even today, there are those who believe FM may be secondary to psychological stress or disordered sleep. Today evidence includes the physiological upset, regardless of what the aggravating factor might be. Still, by the very name itself—fibrositis—it seems the medical community back in 1904 believed the disorder to be inflammatory in nature. Conventional medical practitioners would have considered it foolhardy for someone to follow Dr. Gower’s theories and delay proper treatment.


Finally, in 1981 a connection was made between fibromyocitis and the non-inflammatory systemic symptoms. This led to adoption of the term “fibromyalgia” to identify the syndrome variously described as fibromyocitis, muscular rheumatism, tension myalgia, psychogenic rheumatism, tension rheumatism, neurasthenia, and fibrositis...

Excerpt - Cooper and Miller, 2010                 

Diagnostics

In 1990, the American College of Rheumatology (ACR) adopted the tender point count for diagnosing fibromyalgia. The tender point model was developed for a research study and was not expected to become diagnostic criteria, but it did. Today, this criterion is still the widest known, most likely, because rheumatologists are having a difficult time agreeing with it, and rightly so. (To be discussed in Part II). 

The symptoms of fibromyalgia must affect all four quadrants of the body equally, both sides above the waist and both sides below the waist. In other words, if there is a tender point in the left elbow, there will be another tender point in the same spot on the right elbow.  The painful tender points (not to be confused with trigger points) must be consistent and persist for at least three months. Tender points must be examined by applying enough pressure to make the examiner’s fingernail blanch (turn pale). 



While efficient in diagnosing fibromyalgia, the tender point model met with criticism because not all people believed to have fibromyalgia have 11 tender spots, and others have tender spots located in different areas. It is my opinion that some of these areas are/were due to a frequently overlooked comorbid condition called myofascial pain syndrome. You can search the archived research citations on my website here to see why I might form this opinion.

Other common symptoms historically associated with fibromyalgia are:

  • Pain (often severe and disabling)
  • Widespread body aches and soreness
  • Morning stiffness
  • Tender points
  • Non-restorative sleep (even with eight hours of sleep)
  • Malaise—lack of zest or energy, fatigue

                  
Three of these are considered primary symptoms of fibromyalgia today.

  1. Non-restorative sleep (even with eight hours of sleep)
  2. Body-wide pain
  3. Malaise—lack of zest or energy, fatigue

(Today, cognitive deficit is also considered a primary symptom)

It is believed today that Florence Nightingale (the first nurse) suffered from fibromyalgia and that is why fibromyalgia day is May12th, the day believed to be her birthday.

Historically research has focused on many hypotheses. Despite this,  the World Health Organization included a code for fibromyalgia in the International Statistical Classification of Diseases and Related Health Problems (ICD 10-CM). In 2012, the Social Security Administration made a fuling on how to assess fibromyalgia as a "Medically Determinable Impairment." You can see the ruling here

More to come on diagnostic criteria, blood tests biomarkers, and the discovery of genetic markers that will change the way fibromyalgia is perceived, diagnosed, and treated. 

Watch for it!


Resources


Wednesday, May 14, 2014

Who is Fibro Warriors ~ Living Life? Guest blog by Melissa Swanson


Who is Fibro Warriors ~ Living Life?


Melissa Swanson started Fibro Warriors~Living Life Facebook page in September of 2012. In her quest for understanding and supporting fibromyalgia, she joined various online groups and Facebook pages. Quickly she learned how important it is to be able to talk with others who have been there/done that! More importantly, she believes in sharing information from verified credible sources. Fibromyalgia is real. Melissa also believes in the value of surrounding one's self with positive people in order to create an environment for healthy coping and energy conservation.


Who is Fibro Warriors ~ Living Life?

My name is Melissa. I am a full-time working married sports mom of a very active 14-year-old daughter and a one-year-old Border Collie.

Throughout my childhood, I experienced many symptoms of fibromyalgia and myofascial pain syndrome. I had muscle knots, leg cramps, and sensitivity to light and touch. I bruise easily suffer from high anxiety, panic attacks, and depression.

In 2009, my family experienced a family loss that led to an emotionally stressful year of traveling. The extraordinary physical work also caused more health issues to develop.

I spent 2010 going from doctor to doctor taking every test. Finally, a thorough exam led to the diagnosis of fibromyalgia and other syndromes/diseases that I call evil sidekicks. This is when I began searching the internet to find others who could help me understand what it was like to live life with fibromyalgia. What I found was—having fibromyalgia is like riding a roller coaster with many unpredictable ups-and-downs.

It is important to be your own health advocate. I have found the combination of keeping a daily routine, using prescription medications, finding helpful supplements, stretching, participating in light warm water exercise, maintaining good sleep hygiene, having a positive attitude, and putting together a good team keeps my pain and my health manageable, most days.

My "Fibro Team” consists of my Rheumatologist, Neurologist, primary care provider, Acupuncturist, Chiropractor, Psychologist, a pain management doctor, and a wonderful, positive support group.

Along my journey, I have made wonderful friends and fellow advocates. One of those is Celeste Cooper. I am proud to call her my friend and mentor. Celeste Cooper, RN, BSN, is an Author, pain patient/advocate and fibromyalgia expert at Sharecare.com and thesethree.com.

Through my networks, I share motivational images, helpful hints, questions, and my own experiences. Celeste brings her medical expertise and experience as a patient, registered nurse, educator, legal nurse consultant, and member of the Pain Action Alliance to Implement a National Strategy. She considers herself a conduit of information by sharing what she learns regarding current studies, associated conditions, and so much more.

Fibro Warriors ~ Living Life strives to help others living life with "Fibromyalgia."
The key words are “LIVE LIFE.”

We have made it our mission to tell other Fibromites that they can still live their lives.
We believe through education, positive affirmation & a great support team that we can all be a


Fibro Warrior ~ Living Life.


I am a freelance writer for the online magazine, Living Well with Fibromyalgia (subscribe@http://fibromodem.com)





Saturday, May 10, 2014

Making Our Way to May 12th: New reports - FIBROMYALGIA, a neuro-immune disorder, a biomarker, and the NFMCPA goes to bat by Celeste Cooper


http://TheseThree.com
Jan Chambers and Rae Marie Gleason (Medical Education & Research Director for the NFMCPA) met with the National Institute of Health (NIAMS) in Bethesda, Maryland on March 27, 2014. Ms. Gleason discussed the fact that "there is now the FM/a blood test developed by Dr. Bruce Gillis (EpicGenetics) . Ms. Gleason also informed the NIAMS group that a second FM/a scientific blood biomarker study was presented at the American College of Rheumatology (ACR) meeting this past October (2103), which has been submitted for publication. Ms. Gleason drew attention to the fact that "the FM/a blood test is also being used in an NIH funded study to differentiate fibromyalgia patients from control patients." (Here).

Jan Chambers, President of the National Fibromyalgia and Chronic Pain Association (NFMCPA), has shared her concern of having up to four fibromyalgia diagnostic criteria. She believes, and rightly so, that having the FM/a blood test will provide a differential diagnosis. In light of the different criteria that may be misunderstood by those diagnosing fibromyalgia having a biomarker is important. My concern has always been that when rheumatologists don't agree, how is the general practitioner going to decide which one to use. A huge thank you to Jan Chambers and Rae Gleason for also discussing this at the FDA Fibromyalgia Public Patient-Focused Meeting held on March 26, 2014. You can read more about the meeting here.

The"polysymptomatolgy" (many unexplained symptoms or "fibromyalgianess") in the Wolfe, et al. criteria (2010) has posed a problem for me. Understanding the comorbidities to FM helps the diagnostician, your physician, determine if your symptoms warrant further investigation beyond the primary symptoms of disordered sleep, fatigue, cognitive disturbance, and body-wide pain. Having a reliable biomarker will make certain that research is specifically targeting people with fibromyalgia in light of diagnostic criteria conundrum.

Dr. Robert Bennett has been a leading expert, clinician, and researcher regarding fibromyalgia for many decades, and he and others (2104) believed a study to validate the Wolfe, et al. 2011 criteria was in order. The ACR is paying attention and you can view the updated information here

Other studies, those on large and small polyfiber neuropathy from fibromyalgia skin biopsies, also suggest there is an immune factor involved. (Caro and Winter, 2014). I wondered about an immune connection at the time of the Albrecht, et al. study (2013). It is possible that our future could hold immune-globulin in our future, but more studies are necessary. One thing we can feel more comfortable about is that if study participants are screened with the FM/a test (93% accuracy) there will be no room for a guessing game.  

I believe there is a central reason for why certain diseases cluster with fibromyalgia. In light of the evidence presented here, and the effects they could have on the sympathetic nervous system, fibromyalgia could be reclassified as a neuro-immune disorder. 

My personal thoughts until otherwise contradicted is that fibromyalgia is not equal to centralization of pain. If this were true, every low back patient would also have some of the comorbid disorders of FM, which has not been evidenced. More research is needed, but the NIH is FINALLY headed in the right direction.

Showing my support

I have worked with Jan Chambers and the NFMCPA, including our shared participation in the PAINSproject. Jan is not a person to boast about what she and her organization do. So let me give you a sample.

Jan travels from coast to coast. In this past year, she attended the MYOPAIN conference, the Pain Action Alliance to Implement a National Strategy (PAINS) meeting in Washington DC, [You can read the report on my website here, the ACR meeting, the FDA meeting on Drugs and Treatments for fibromyalgia (twice, the first was canceled after she got there due to weather), and she met with the NIH. Not an easy feat for a fibromyalgia patient that headquarters in Utah. Jan sponsors awareness programs across the nation, she implemented the Leadership program for advocates, she has spoken to Utah legislators and has been instrumental in legislation to benefit Medicaid patients with fibromyalgia. She, through the NFMCPA, publishes Fibromyalgia & Chronic Pain LIFE magazine, a newsletter you can get directly delivered to your email, and she gives countless speeches to raise awareness. She not only speaks directly to patients through various forums, she also networks directly with physicians, fellow advocates, and other change agents. This is my shortlist. I am grateful to call her our friend and I encourage you to donate $12 to the NFMCPA, here, so she can continue the important work she does.

“Knowing is not enough, we must apply. Willing is not enough, we must do.”
-- Johann Wolfgang von Goethe

You can self-advocate by sharing the information presented here with your team of healthcare providers and your peers. You may have an underlying condition diagnosed that is treatable. In our current healthcare delivery model, it is imperative that we use our voice, not only for ourselves, but also for future generations. I have found over-and-over again, we don't know how far our voice reaches, but one thing is certain, if we don't speak—no one will listen.


Resources:

Albrecht PJ, Hou Q, Argoff CE, Storey JR, Wymer JP, Rice FL. Excessive Peptidergic Sensory Innervation of Cutaneous Arteriole-Venule Shunts (AVS) in the Palmar Glabrous Skin of Fibromyalgia Patients: Implications for Widespread Deep Tissue Pain and Fatigue. Pain Med. 2013 May 20. doi: 10.1111/pme.12139. [Epub ahead of print]

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.

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]
Read more here

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]

Fernandez-de-Las-Penas C, Penacoba-Puente C, Cigaran-Mendez M et al. Has catechol-O-methyltransferase genotype (Val158Met) an influence on endocrine, sympathetic nervous and humoral immune systems in women with fibromyalgia syndrome? Clin J Pain. 2014.30(3):199-204.

New Diagnostic Criteria Pinpoints Fibromyalgia CME by Diedtra Henderson, here.

Martínez-Martínez LA1, Mora T, Vargas A, Fuentes-Iniestra M, Martínez-Lavín M. Sympathetic nervous system dysfunction in fibromyalgia, chronic fatigue syndrome, irritable bowel syndrome, and interstitial cystitis: a review of case-control studies. J Clin Rheumatol. 2014 Apr;20(3):146-50.

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]

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.

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.

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

Celeste Cooper is a retired RN, educator, fibromyalgia patient, and author of books related to chronic pain and illness. You can read more about Celeste and her work on her Amazon Author Profile, here , or look to the right of this blog for direct links to her work.

Celeste is a fibromyalgia expert for Dr. Oz, et al., at Sharecare.com, here, and she advocates for all chronic pain patients as a participant in the Pain Action Alliance to Implement a National Strategy, here. You can read more educational information and about her books on her website, http://TheseThree.com


Sunday, May 4, 2014

Walking In Strength: Guest blog from a Spoonie Clarissa Shepherd


Fellow spoonie (see "Moving into the Month of Spoonie Awareness"), Clarissa Shepherd, has a unique talent for engaging "Fellow Travelers" with fibromyalgia and myalgic encephalomyelitis/chronic fatigue syndrome through her support group on Facebook. She encourages others to speak about their concerns through ongoing weekly topics of "Sharing, Caring, Grateful, and Did Wells." Following is a note she has written to those who walk this path together.

I thank my friend for allowing me to share her intimate thoughts, words of encouragement, and recognition of all our Fellow Travelers.

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For those of us who face chronic illness each day, thinking positive is not an easy task. We don't seek negativity; it finds us. Despite its efforts to interfere, we can still find ways to deal with the up's and down's imposed by chronic illness. I [Clarissa] feel we do a grand job enduring and surviving in spite of the long list of daunting symptoms.



Our journey may be very difficult, long, and tiresome, yet each of you does it with such grace, grace as I've never seen before. Learning to live within our limitations and think creatively is a positive thing. Despite your symptoms, you find ways to rearrange your life in order to live it. I find each of you amazing for embracing change, for finding ways to accomplish daily tasks and entertain yourself. You uncover your hidden talents and discover new ways to embrace change. You're learning an entirely new way of living, a new way of thinking, you've learned how to rethink what productive means to you as individuals and redefine healing, and you are doing it soulfully. With forward momentum, you find ways to accept challenge. You are courageous.

You are a vital human being. This illness is not of your own making. It does not define you. You show your strength and courage with each breath you take every obstacle you overcome; you are fearless, even in your pain.

Now, I want you to take this truth into each day. Allow it to cover your entire being. There will be those in your life that don't, or won't, understand what you face each day. Chronic illness has taught me one very important thing: some people will fill you up, while others will drain you, so choose wisely. 

Know the reality that you are wonderful just as you are. You have a type of bravery that's seldom seen. I see it - I know it's there. Now, believe it for yourself. The strength you show is who you are; it is in you, beside you, and in front of you. Know this and allow the light that's shining guide you, hold you, and sustain you. I applaud the person you are, for you are the description of courage. 

Clarissa Shepherd is founder of the Facebook group Fellow Travelers. She provides support to people living with FM and ME/CFS and she is author of Find Your Way: A Guide to Healing While Living with Chronic Fatigue Immune Dysfunction Syndrome and Fibromyalgia.

Saturday, May 3, 2014

Advocates Respond to Dr. Drew Pinsky by Celeste Cooper


Having experienced:
  • horrific pain related to menstrual cycles
  • my first cystoscopy at age five
  • two surgeries for lysis of adhesions (cutting out scars that developed around my internal organs as a result on polycystic ovarian disease resulting in a total hysterectomy at age 35)
  • a bladder that is not only in pain, but also creates an environment for chronic infection 
  • vulvodynia and bowel problems that will last throughout my lifetime
  • treatments of  daily antibiotics, constant pelvic floor therapy, vaginal dilators to control internal trigger points and pain, and electrical stimulation in areas where it wouldn't seem right,


I believe I have the right to say I am disgusted that Dr. Drew Pinsky would suggest that interstitial cystitis is all in our heads. This is a learning experience for physicians to know when to hold their tongue.  As patients, we get it that no one person can know it all. So why didn't this egocentric physician reserve the right to refer to a specialist instead of blundering through a question he was ill prepared answer? Read on spoonies, you will see the need to advocate with an assertive voice

Please take a look at Dr. Drew & Loveline Crossed The Line, here


thesethree.com/Pain_Activist
My comments are as follows:

Dr. Drew is a BULLY! Those who use their power in the media spotlight should be held accountable for bullying behavior. There is exceptional gravity in this particular situation, because physicians take an oath to do no harm.

While Dr. Drew offers some good medical advice at times, manners such as his (and it's not the first I have witnessed from him) should speak to his credibility. Shouldn't he be held to the same standard expected from a patient? When healthcare providers behave this way, they lose the trust of the very people they THINK they are helping. What is Dr. Drew's goal? Is it improved patient outcome or has he let fame and his ego drain him of his capabilities to be objective?

His judgments are in direct contradiction to helping people in pain. Pain is not just a physical problem. It nags and threatens to destroy a patient's emotional, spiritual, social, and financial ability to live life in a meaningful way. Behavior such as that of Dr. Drew harms the patient and in some cases, contribute to the patient's demise. This is an example of how NOT to treat people. Making a bad situation worse, this physician touts himself as an addiction specialist. In my opinion, he has a very tainted point of view. His behavior is a disgrace to his peers who do treat their patients with dignity and respect. Actions such as his are everything we work against in our mission to change the way pain is perceived, judged, and treated, defined in the IOM report "Relieving Pain in America," a report from his PEERS! (Accessible here.)


When a physician tries to set as judge and jury regarding someone else's pain, they become part of the problem. Bullying physicians and healthcare providers need to get the heck out of Dodge.

This is not IC awareness month, but this blog speaks to everyone with painful and misunderstood conditions as we begin a power packed month for spoonies. (See "Moving into the Month of Spoonie Awareness," here.)


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

Celeste Cooper is a retired RN, educator, fibromyalgia patient, and author of books related to chronic pain and illness. You can read more about Celeste and her work on her Amazon Author Profile, here , or look to the right of this blog for direct links to her work.

Celeste is a fibromyalgia expert for Dr. Oz, et al., at Sharecare.com, here, and she advocates for all chronic pain patients as a participant in the Pain Action Alliance to Implement a National Strategy, here. You can read more educational information and about her books on her website, http://TheseThree.com



Celeste's Website

Celeste's Website
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