The short answer is fibromyalgia is frequently dismissed because of inadequate information, education and awareness among those who primarily treat us, despite the plethora of information available. How do we get this material into the hands of the right people? You, the patient is often better read regarding your condition because you have a vested interest, your own health.
Misdiagnosis and neglectful treatment of overlapping conditions
Fibromyalgia can be misdiagnosed when a thorough history and physical are not completed. The preliminary proposed diagnostic criteria (PDC) for fibromyalgia disregard what clinicians have become comfortable with, the tender point count. While I agree that tender points may really be trigger points, and contribute to the centralization of pain causing widespread allodynia, I fear this new criteria will give permission to leave out one of the most valuable tools for diagnosis, “The physical exam.” If this criteria is allowed to stand with the American College of Rheumatology, it will only cause further misdiagnosis of FM and lead us down another decade of inappropriate treatment. The proposed criteria only consider a check list of widespread pain, and symptoms of various comorbid conditions (all jumbled up together as primary to FM. These symptoms may be attributed to an overlapping condition frequently found in fibromyalgia patients creating a missed diagnosis.
So what can you do about it?
Do regular self examinations and use the anatomical diagram and the many other helpful tools found in our book so that your physician or other healthcare provider (HCP) can visually relate to your experiences. If you find taut bands of muscle, or myofascial trigger points (there can be several in one band of muscles), mark it, then have your HCP feel it too. If you are experiencing unusual symptoms, note them on your log from your last visit and discuss them with your doctor, and ask if they might be attributed to one of the comorbid or overlapping conditions found in fibromyalgia. Approach the subject with documented studies or information related to symptoms such as those found in our book. Lead in with a statement such as, “You probably already know this, but I wanted to share it with you.” (Refer to the multiple resources for this blog located at the end, which are just a tip of the iceberg.) Remember, doctors and HCPs don’t take every medical journal. If they are the right doctor for you, they will be appreciative.
You can print off this blog and take it with you.
Research continues to point fibromyalgia in the direction of a neurological disorder with centralization of pain, which is exacerbated by peripheral pain stimulus. Myofascial pain syndrome, AKA chronic myofascial pain, from knotted up pieces of muscle fiber (trigger points) has been found in most fibromyalgia patients and is a peripheral pain stimulus. (See http://www.sharecare.com/user/celeste-cooper/blogs/show/how-is-fibromyalgia-related-to-myofascial-pain-syndrome ) In addition, comorbid conditions, such as, TMJ, restless leg syndrome, migraine, interstitial cystitis, all have this myofascial component so in essence FMers deal with a wheel spinning out of control, sending off pain impulses that keep us ramped up and ready for disaster.
Only better diagnostic criteria and education is going to solve this problem.
This blog is based on my answer as fibromyalgia expert at Share Care, “Why is fibromyalgia so frequently dismissed or misdiagnosed?”
All blogs, posts and answers are based on the work in Integrative Therapies for Fibromyalgia, Chronic Fatigue Syndrome, and Myofascial Pain: The Mind-Body Connection by Celeste Cooper, RN, and Jeff Miller, PhD. 2010, Vermont: Healing Arts press and are not meant to replace medical advice. http://www.thesethree.com
Resources:
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
Bennett RM, Goldenberg DL. 2011. Fibromyalgia, myofascial pain, tender points and trigger points: splitting or lumping? Bennett and Goldenberg Arthritis Research & Therapy. 13:117.
Alonso-Blanco C, Fernández-de-las-Peñas C, Morales-Cabezas M, Zarco-Moreno P, Ge HY, Florez-García M. Multiple active myofascial trigger points 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.
Brezinschek HP. Mechanisms of muscle pain : significance of trigger points and tender points.
Z Rheumatol. 2008 Dec;67(8):653-4, 656-7.
CDC/arthritis/fibromyalgia (accessed 11-28-2011). http://www.cdc.gov/arthritis/basics/fibromyalgia.htm
Cooper, C and Miller, J. Integrative Therapies for Fibromyalgia, Chronic Fatigue Syndrome, and Myofascial Pain: The Mind-Body Connection. Vermont: Healing Arts Press, 2010.
HY Ge , Y Wang, B. Danneskiold-Samsøe , et. Al., “The Predetermined Sites of Examination for Tender Points in Fibromyalgia Syndrome Are Frequently Associated With Myofascial Trigger Points.” Pain. 2009 Nov 13.
HY Ge , Wang Y, Fernández-de-Las-Peñas C, Graven-Nielsen T, Danneskiold-Samsøe B, Arendt-Nielsen L. Reproduction of overall spontaneous pain pattern by manual stimulation of active myofascial trigger points in fibromyalgia patients. Arthritis Res Ther. 2011 Mar 22;13(2):R48.
D. M. Niddam, R. C. Chan, S. H. Lee, T. C. Yeh, and J. C. Hsieh, “Central representation of hyperalgesia from myofascial trigger point,” NeuroImage 39 (2008): 1299–1306.
D.G. Simons, J.Travell, and L. S. Simons, Myofascial Pain and Dysfunction: The Trigger Point Manual, 2nd ed. (Baltimore: Williams and Wilkins, 1999.)
Fibromyalgia Network News/Overlaps with Fibromyalgia (accessed 11-28-2011).
http://www.fmnetnews.com/fibro-basics/related-conditions
Hubbard, JE. Myofascial trigger points. What physicians should know about these neurological imitators. Minn Med. 2010 May;93(5):42-5.
Jones KD, King LA, Mist SD, Bennett RM, Horak FB. Postural control deficits in people with fibromyalgia: a pilot study. Arthritis Res Ther. 2011 Aug 2;13(4):R127.
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. Epub 2009 Dec 2.
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]
McCarberg BH. Clinical Overview of Fibromyalgia. Am J Ther. 2011 Feb 15. [Epub ahead of print]
Mira E, Martanez MP, Sanchez AI et al. 2011. When is pain related to emotional distress and daily functioning in fibromyalgia syndrome? The mediating roles of self-efficacy and sleep quality. Br J Health Psychol. 16(4):799-814.
National Institute of Health, NIAMS/fibromyalgia (accessed 11-28-2011).
http://www.niams.nih.gov/Health_Info/fibromyalgia/
Nickel JC, Tripp DA, Pontari M, Moldwin R, Mayer R, Carr LK, Doggweiler R, Yang CC, Mishra N, Nordling J.J Urol. Interstitial cystitis/painful bladder syndrome and associated medical conditions with an emphasis on irritable bowel syndrome, fibromyalgia and chronic fatigue syndrome. 2010 Oct;184(4):1358-63. Epub 2010 Aug 17.
Staud R. Heart rate variability as a biomarker of fibromyalgia syndrome.
Fut Rheumatol. 2008 Oct 1;3(5):475-483.
S. Tang, H. Calkins, and M. Petri. Neuraly mediated hypotension in systemic lupus erythematosus patients with fibromyalgia. Rheumatology (Oxford) May 1, 2004 43(5):609-614
V
iola-Saltzman M, et al "High prevalence of restless legs syndrome among patients with fibromyalgia: A controlled cross-sectional study" Journal of Clinical Sleep Medicine ,2010; 6: 423-427.
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. Rheumatol. 2011 Feb 1.
Monday, November 28, 2011
Monday, November 21, 2011
Ups and Downs; unpredictability of FM and ME/CFS. How can I avoid a flare during the holidays?
Identifying comorbid (meaning they cluster with a particular disorder/disease) and co-existing illnesses is important, either way, they are great aggravators to the symptoms of fibromyalgia and myalgic encephalomyelitis /CFS (AKA, CFID) and to each other. Identifying other contributors to pain, fatigue and dysfunction are important too. The short list is poor posture, inadequate sleep, anxiety (particularly during the holidays), infection, sedentary lifestyles, overdoing etc.
Paste this to your mirror:
“This is the season to reflect, meditate, and find pleasure in the company of others.”
Learn more about managing stress in crisis:
Share Care Fibromyalgia expert.
Healing, harmony and hope, Celeste
Excerpt Chapter Two©
We are susceptible to a flare when we deviate in any way from our personally tailored, multidisciplinary treatment plan. This worsening of symptoms does not mean FM is progressing from one step to the next in the disease process. “Unpredictable” is the best way to describe the way symptoms occur. It is literally a 24/7 job for all of us, and varies in difficulty from one patient to another.
(Cooper and Miller, pg 23-24, 2010)
Excerpt Chapter Six ©As we come upon the holiday seasons, stress always seems to make the short list. Try to avoid known stressors over the holidays, stay within your identified limits, let others help, commit without excuses, but don’t over commit, and understand that sometimes it’s okay to say no, after all everybody does at some time or other. Most importantly make a conscious effort to enjoy and pick out moments that you shall treasure from your experience. For every down there is an up, it is the way of life. Stay on top of it.
When you have a chronic illness, it’s easy to feel overloaded. Energy is a valuable commodity, and lack of it is a perpetuating factor in circuit overload. We, in our unique flock, often seek advice on how to deal with issues that cause us to feel so overwhelmed.
(Cooper and Miller, pg. 294, 2010)
Paste this to your mirror:
“This is the season to reflect, meditate, and find pleasure in the company of others.”
Learn more about managing stress in crisis:
Chapter 6 DEALING WITH CIRCUIT OVERLOAD, PG. 294 - 309All blogs, posts and answers are based on the work in Integrative Therapies for Fibromyalgia, Chronic Fatigue Syndrome, and Myofascial Pain: The Mind-Body Connection by Celeste Cooper, RN, and Jeff Miller, PhD. 2010, Vermont: Healing Arts press and are not meant to replace medical advice. http://www.thesethree.com
Brain Fog—Symptoms of Blowout before a Power Failure 295
Time Management—An Exercise in Energy Conservation 302
Crisis Management—Dealing with Major Life Events 307
Chapter Conclusion 309
Summary Exercise: Unloading the Gray Matter 309
Share Care Fibromyalgia expert.
Healing, harmony and hope, Celeste
Labels:
CHRONIC FATIGUE SYNDROME,
coping,
fibromyalgia
Friday, November 11, 2011
Fibromyalgia pleasing or unpleasing immune response, you decide.
I met some resistance regarding my answer to the question, “Could fibromyalgia be caused by an aberrant immune response?” The comment suggested it was a waste of the readers time and requested that I “Stop repeating the same from 20 years ago. PLEASE!”
I believe it is important to validate my response to the question, so others understand why I answered the question the way I did.
YOU DECIDE.
2011. Coaccioli S, Varrassi G. Chronic degenerative pain: an update on abdominal pain in comparison to rheumatic diseases. J Clin Gastroenterol. 2011 Aug;45 Suppl 2:S94-7." Extra-articular syndromes, notably fibromyalgia, can be a lifelong rheumatic condition characterized by widespread musculoskeletal pain and functional impairment, without any known structural or inflammatory cause. Irritable bowel syndrome (IBS) occurs in around half of patients with fibromyalgia raising the possibility of a possible overlapping or underlying pathophysiology. The dysfunction of bidirectional neural pathways and viscerovisceral cross-interactions within the central nervous system has been proposed as a possible central hypersensitization disorder responsible for the extraintestinal manifestations of IBS. Common inflammatory and molecular pathways may also be present in which a dysregulation of the immune system leads to a chronic inflammatory response. "
Possibly the most exciting research of late suggesting immune dysfunction is 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]
http://www.ncbi.nlm.nih.gov/pubmed/21615807
“FM-only patients showed no postexercise alterations in gene expression, but their pre-exercise baseline mRNA for two sensory ion channels and one cytokine were significantly higher than controls.”
Cytokine=referring to the immunomodulating agents (interleukins, interferons, etc.).
All blogs, posts and answers are based on the work in Integrative Therapies for Fibromyalgia, Chronic Fatigue Syndrome, and Myofascial Pain: The Mind-Body Connection by Celeste Cooper, RN, and Jeff Miller, PhD. 2010, Vermont: Healing Arts press and are not meant to replace medical advice. www.thesethree.com
I believe it is important to validate my response to the question, so others understand why I answered the question the way I did.
YOU DECIDE.
Here is my original answer to “Could fibromyalgia be caused by an aberrant immune response?”The research does continue today. Fibromyalgia is a comorbid condition to Lupus, RA, Sjorgrens, Hashimoto's, and AS, all autoimmune disorders. The following study was done in 2008, not 20 years ago. X. J. Caro, E. F. Winter, and A. J. Dumas, “A subset of fibromyalgia patients have findings suggestive of chronic inflammatory demyelinating polyneuropathy and appear to respond to IVIg,” Rheumatology 47, no. 2 (2008): 208–11
“Good question. It’s really about which came first the cart or the horse.
We do not know the cause of fibromyalgia, but we do know that there is centralization of pain. Comorbid conditions, those that occur more frequently with FM also indicates there is an upset in communication between the brain and the periphery, including the autonomic nervous system. Certainly, an aberrant immune response could exist, and research has been done and continues on this possibility, but it has also been hypothesized that FM is the result of a poor immune system.”
2011. Coaccioli S, Varrassi G. Chronic degenerative pain: an update on abdominal pain in comparison to rheumatic diseases. J Clin Gastroenterol. 2011 Aug;45 Suppl 2:S94-7." Extra-articular syndromes, notably fibromyalgia, can be a lifelong rheumatic condition characterized by widespread musculoskeletal pain and functional impairment, without any known structural or inflammatory cause. Irritable bowel syndrome (IBS) occurs in around half of patients with fibromyalgia raising the possibility of a possible overlapping or underlying pathophysiology. The dysfunction of bidirectional neural pathways and viscerovisceral cross-interactions within the central nervous system has been proposed as a possible central hypersensitization disorder responsible for the extraintestinal manifestations of IBS. Common inflammatory and molecular pathways may also be present in which a dysregulation of the immune system leads to a chronic inflammatory response. "
Possibly the most exciting research of late suggesting immune dysfunction is 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]
http://www.ncbi.nlm.nih.gov/pubmed/21615807
“FM-only patients showed no postexercise alterations in gene expression, but their pre-exercise baseline mRNA for two sensory ion channels and one cytokine were significantly higher than controls.”
Cytokine=referring to the immunomodulating agents (interleukins, interferons, etc.).
All blogs, posts and answers are based on the work in Integrative Therapies for Fibromyalgia, Chronic Fatigue Syndrome, and Myofascial Pain: The Mind-Body Connection by Celeste Cooper, RN, and Jeff Miller, PhD. 2010, Vermont: Healing Arts press and are not meant to replace medical advice. www.thesethree.com
Labels:
fibromyalgia,
immunity
Tuesday, November 8, 2011
Fibromyalgia and Chronic pain, Consistent Cousins, Shared Machinery
A recent article “Evidence for Shared Pain Mechanisms in Osteoarthritis, Low Back Pain, and Fibromyalgia” suggests that chronic pain from these sources have a common effect called centralization. This means that the peripheral pain input to the brain causes it to become hypersensitive. You can view the article and the authors at PubMed
The keywords I see are peripheral stimulation and centralization. Where there are diseased joints or vertebrae pulling on muscle, trigger points can develop and we know myofascial trigger points are seen in FM.
Management of fibromyalgia includes identifying aggravating and perpetuating factors.
This includes bringing co-existing conditions under control, including the presence of myofascial trigger points, metabolic disturbances, sleep dysfunction, anxiety, restless leg syndrome, multiple chemical sensitivities, migraine and other comorbid conditions.
This blog is based on the question and my original answer to “How is fibromyalgia related to chronic pain,” at ShareCare.
View my other answered questions as expert at ShareCare. fibromyalgia expert
All blogs, posts and answers are based on the work in Integrative Therapies for Fibromyalgia, Chronic Fatigue Syndrome, and Myofascial Pain: The Mind-Body Connection by Celeste Cooper, RN, and Jeff Miller, PhD. 2010, Vermont: Healing Arts press and are not meant to replace medical advice.
The keywords I see are peripheral stimulation and centralization. Where there are diseased joints or vertebrae pulling on muscle, trigger points can develop and we know myofascial trigger points are seen in FM.
Management of fibromyalgia includes identifying aggravating and perpetuating factors.
This includes bringing co-existing conditions under control, including the presence of myofascial trigger points, metabolic disturbances, sleep dysfunction, anxiety, restless leg syndrome, multiple chemical sensitivities, migraine and other comorbid conditions.
This blog is based on the question and my original answer to “How is fibromyalgia related to chronic pain,” at ShareCare.
View my other answered questions as expert at ShareCare. fibromyalgia expert
All blogs, posts and answers are based on the work in Integrative Therapies for Fibromyalgia, Chronic Fatigue Syndrome, and Myofascial Pain: The Mind-Body Connection by Celeste Cooper, RN, and Jeff Miller, PhD. 2010, Vermont: Healing Arts press and are not meant to replace medical advice.
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