Cutting the Ties to fibromyalgiaUpdate 2015

This article is an attempt to provide the latest findings to both health care professionals and the general public. At times the language is technical. SC

Cause:

Fibromyalgia (FM) is a common medical disease of unknown cause (etiology) characterized by chronic widespread muscular pain affecting all four quadrants of the body of over 3 months duration. This is termed primary fibromyalgia after a number of similar disorders are investigated and ruled out. A majority of the patients also have associated findings of poor memory or/and concentration (cognitive deficits) also known as brain fag or fibrofog, a sleep disorder with unrefreshing sleep with a disorder of non-REM sleep (Modofsky), and post exertional worsening of their symptoms. New information indicates that there may be a genetic tendency to acquire this disorder. Other family members with the disorder may be present. Some patients with this disorder demonstrate a sensitivity to being touched. There is a high prevalence of emotional problems, especially depression

New studies suggest that several genetic mechanisms may be present. These defects are multiple and affect the serotonergic as well as the catecholamine systems.

Genetic references: Fibromyalgia, mood disorders, and intense creative energy: A1AT polymorphisms are not always silent. Schmechel DE, Edwards CL. Falls Neurological and Memory Center, Caldwell Memorial Physician Network, USA. dev.schmechel@gmail.com) ; Yunus MB, Khan MA, Rawlings KK, Green JR, Olson JM, Shah S. Genetic linkage analysis of multicase families with fibromyalgia syndrome. ;J Rheumatol 1999 Feb;26(2):408-12; Buskila D, Neumann L Genetics of fibromyalgia. Curr Pain Headache Rep. 2005 Oct;9(5):313-5; Gursoy S, Erdal E, Herken H, Madenci E, Alasehirli B, Erdal N. Significance of catechol-O-methyltransferase gene polymorphism in fibromyalgia syndrome. Rheumatol Int 2003 May;23(3):104-7;." Offenbaecher M, Bondy B, de Jonge S, Glatzeder K, Kruger M, Schoeps P, Ackenheil M. Possible association of fibromyalgia with a polymorphism in the serotonin transporter gene regulatory region. Arthritis Rheum 1999 Nov;42(11):2482-8 (more references upon request)

Incidence:

The condition affects women more than men (8:2) and affects about 10 million individuals in the United

States. Children may also be affected. It tends to run in families. In fact, fibromyalgia is considered as

the most common neurological disorder in adults (Pfiezer Pharmaceutical Company). ADHD is the most

common neurological disease in children. About 30% of patients in the average rheumatologist’s waiting

room have fibromyalgia. About 5% of a primary care physician’s patients have fibromyalgia.

Pathophysiology:

The FM patient experiences pain amplification due to abnormal sensory processing in the central nervous system. An increasing number of scientific studies now show multiple physiological

abnormalities in the FM patient, including: increased levels of substance P in the spinal cord, low levels of blood flow to the thalamus region of the brain, HPA axis hypofunction, low levels of serotonin and tryptophan and abnormalities in cytokine function. This disorder has been demonstrated to have a central nervous system basis, not originating in the muscular regions even through the latter demonstrates pain and stiffness. This condition is termed central sensitization and affects the lower brain processing centers. Even chronic osteoarthritis can result in central sensitization so that basically any chronic pain disorder can result in an overtaxing of the lower brain processing centers after a while and cause secondary changes including the excessive manufacturing of nerve growth factor and other sensitizing substances. The result is similar to the phenomenon of a “phantom leg syndrome” where an individual feels his leg is hurting him even after it is amputated. In addition there are consistent immunological patterns noted with these patients compared with healthy controls. Certain chemicals (cytokines) released from their white cells (IL-4, IL-5 and IL 13) are found to be much lower than controls. In addition, there is generally decreased cytokine expression after mitogen stimulation with PHA and ionomycin. These findings suggest a unique pattern and a neuroimmunological role in this disorder. Immune references:. (Sturgill J. et al Unique Cytokine Signature in the Plasma of Patients with Fibromyalgia, Journal of Immunology Research, Volume 2014 (2014); Wallace DJ, Linker-Israeli M, Hallegua D, et al: Cytokines play an aetiopathogenetic role in fibromyalgia: a hypothesis and pilot study. Rheumatology (Oxford) 2001, 40:743–749.; Behm et

al. Unique immunologic patterns in fibromyalgia BMC Clinical Pathology 2012, 12:25 (more

references available upon request)

Clinical Picture:

The widespread pain of FM is found in muscles and tendons. Sometimes the skin itself is tender to touch (allodynia). Certain areas on the body are more likely to be tender and present in this disorder. These painful areas are not trigger points but tender points that produce exaggerated pain response with about 2 pounds of force as compared to surrounding tissue. Physicians also understand that certain areas are not very tender and can act as control points. Note that joint deformity, joint swelling and redness are not characteristic of primary fibromyalgia nor is an elevated sedimentation rate or C reactive protein as markers of inflammation. Joint stiffness can be seen however. Low level RA or ANA testing can sometimes be found in the blood but may

also be present in the general population. Positive tests of this type warrant further investigation for other causes of pain.

The Original 1990 ACR criteria utilized 11 out of 18 points positive in the following areas. This means the physician should examine control points that are not tender in addition to finding at least eleven out of the eighteen points defined by the American College of Rheumatology. These are:

Back of the neck C6-7 paravertebral, shoulders: trapezius and supraspinatous motor points, chest wall (costochondral regions and pectoralis minor motor point), bend of the elbow, lower back at L5 paravertebral area, Hips over the femoral bursa region, knees (inferior to the joint.), scapula near the infraspinatous motor point, thighs near the fascia

lata motor point and shins. http://www.nlm.nih.gov/medlineplus/

Fibromyalgia was formerly a controversial disease process which had both critics and champions in the medical community. There is no established and accepted blood test or marker to objectively assist in establishing the diagnosis the problem, which for many years was considered non-existing, malingering or at most psychogenic in origin. At this time the process is better understood through nuclear imaging and functional MRI studies and immunological testing (research) and is accepted by a majority of physicians, the AMA and the arthritic organizations internationally.

This change in attitude began with the America College of Rheumatology 1990 criteria for the diagnosis of this disorder. 11 out of 18 tender areas must be present in addition to excluding other causes of widespread general pain affecting all quadrants and present for at least 3 months.

In May of 2010 the ACR revised the criteria since 25% of fibromyalgia patients did not meet the original 1990 criteria when relying on the demonstration of tender points alone. The newer

criteria (Wolf et al. Arthritis Care and Research Vol. 62, No. 5 May 2010 p.600-610) also relied more on the associated symptoms that fibromyalgia patients generally expressed. This new criteria improves the diagnostic sensitivity to nearly 90%.

Social Security Ruling (SSR) 12-2p, provides guidance on how the Administration will develop evidence to establish that a person has a medically determinable impairment (MDI) of fibromyalgia, and how it will evaluate this condition in disability claims and in continuing disability reviews under both Titles II ad XVI of the Social Security Act. The ruling, which was effective upon publication, appears in the July 25, 2012, issue of the Federal Register (77 Fed. Reg. 43640).

Often fibromyalgia patients suffer from other disorders with a greater likelihood that controls. These include migraine, restless legs and irritable bowel syndrome. These disorders are related to genetic factors with utilization of serotonin or dopamine. Other symptoms include unrefreshing sleep, post exertional worsening of symptoms, extreme fatigue and difficulty concentrating. Patients often complain of coldness and paresthesias, their skin may be tender to touch (hyperesthesia), headaches other than migraine, and somatic dysfunction or myofascial

pain syndromes. One study demonstrated structural problems (osteopathic or chiropractic lesions or myofascial pain syndromes) in 88% of cases.

My observations.

I have been a physician for over 40 years and have had training in immunology, allergy and rheumatology. This disorder has always been difficult for physicians to significantly help including myself. With Social Security finally accepting the disorder following the 2010 Guidelines, and less confusion from the insurers and medical community after several pharmacologic agents were introduced to assist the symptoms. In addition, we are seeing more patients being diagnosed properly than in previous years. There is still a stigma of some physicians to believe that it is psychosomatic, but in order to receive drug approval on some of the newer drugs, the pharmaceutical company actually had to find ”pure” fibromyalgia patients with no evidence of significant psychiatric disease. There is approximately the same incidence of significant psychiatric disease with FM as with any chronic painful disease, such as rheumatoid arthritis.

The FDA approved medications are of some assistance in improving symptoms in some FM patients though not very helpful in others. In the group that is not significantly helped by FDA approved medication such as Cymbalta (Duloxetine) Lyrica (pregabalin) or Savella (milnacipran), amityptiline, or gabapentin are often utilized as well. These are sometimes combined with combined with cognitive therapy, graded exercise protocols, physical therapy, occupational therapy, or alternative medicine treatments including manipulation or acupuncture, homeopathy or naturopathy.

These methods truly help some patients and this office does prescribe medications when they are beneficial. For those who are not sufficiently assisted another, a more complex holistic method is utilized.

The first step is to make sure that the patient actually has fibromyalgia and not something that resembles it.

Secondary fibromyalgia

Primary fibromyalgia is present when the ACR guidelines are followed and secondary causes of fibromyalgia is eliminated. Initially, when confronted with a chronic widespread pain syndrome, physicians should exclude other causes and about half of all presenting cases will have a secondary cause if properly studied. This is especially relevant for autoimmune or connective tissue disease. These include nonspecific connective tissue disease, periarteritis nodosa, systemic lupus, mixed connective tissue disease, Sjorgrens syndrome, rheumatoid arthritis, dermatomyositis, polymyositis and for those over 65, polymyalgia rheumatica.

Another entity to exclude is complex mechanical issues secondary to trauma. About 12 % of secondary fibromyalgia follows a whiplash. Sometimes, following surgery, a chronic pain syndrome develops, at first locally and then generally. This is secondary fibromyalgia with central sensitization.

Next exclude thyroid myopathy with proper testing. Next exclude statin myopathy. In rare cases a systemic disease such as cancer or hepatitis can produce generalized pain so the physician should be alert to this and thorough in the evaluation.

If all these are excluded, and the patient provides a history compatible with hypersensitivities or allergies, investigate food and chemical sensitivities, and allergies

There is a 10 to 20% overlap with cases of chronic fatigue syndrome. Though these cases share some features. The criteria for CFS diagnosis are different, the cognition and fatigue of CFS patients is more severe, the pattern of tender points are not present (ACR criteria) and the pain is less.

Infections: Lyme’s disease and other chronic infections can sometimes be overlooked as a secondary FM cause and a good history is essential. In fact all the secondary causes of FM (about 50% of the total cases I see), often respond poorly to FDA approved drugs for primary FM and require specific treatments to help them.

Occasionally psychiatric mechanisms such as a somatoform disorder resemble fibromyalgia. This tends to be overdiagnosed. At one time it was called psychogenic rheumatism (Boland 1947). Even earlier it was known as inflammatory myositis (Gower 1904). Both are incorrect.

My method

With this method there is a significant improvement (70-80%) with primary fibromyalgia and some cases of secondary fibromyalgia though the results are less predictable.

I work with a team approach. I perceive that I will act as a quarterback and they are other members of the team, On this team is the patient, a psychologist to deal with their stress perception (cognitive therapy), assist them with wellness behavior instead of illness behavior concepts and use methods to reduce fear (fear avoidance therapy). This is best done with cognitive therapy supplemented, in my center by energy psychology concepts, such as EMRD, thought field therapy and others. Meditation and relaxation methods are taught. The purpose is to allow the patient to better accept their illness and deal with their impairment and pain. It is also important to allow the patient to realize that they are the most important part of our imagined team and that both physical and emotional stresses may aggravate FM so that they must learn better ways to deal with these. There are often comorbidities with these patients and mood disorders and substance abuse are the most common. Migraine, IBS and chronic fatigue syndrome are sometimes seen as well. Hudson JI, Goldenberg DL, Pope HG Jr, Keck PE Jr,

Schlesinger L. Comorbidity of fibromyalgia with medical and psychiatric disorders. Am J Med 1992

Apr;92(4):363-7

The next member of the team is a structural specialist, usually a manipulating type osteopathic or chiropractic physician adept in indirect methods such as counterstrain, muscle energy, Jones and other methods. Vigorous manipulation and physical therapy should be avoided. Slow gentle range of motion and stretching exercise methods are helpful.

My job as a member of the team is to provide medical treatment. This includes reducingnarcotics if possible (or eliminate them). In about 10% of patients this is not readily possible and I will prescribe Naltrexone 2 to 4.5 mg daily according to the Stanford studies. Younger J1, Noor N, McCue R, Mackey S. Low-dose naltrexone for the treatment of fibromyalgia: findings of a small, randomized, double-blind, placebo-controlled, counterbalanced, crossover trial assessing daily pain levels. Arthritis Rheum. 2013 Feb;65(2):529-38.

I also would prefer not to use muscle relaxants if at all possible as there is no studies of long term efficacy in this disorder. I will correct Vitamin D and magnesium deficiencies if present with a goal of 35 to 55 levels of 25 OH Vitamin D. It is important to correct hormone imbalances as well. We use salivary or blood testing to assist us. There is a subset of these individuals with orthostasis (postural orthostatic tachycardia syndrome or one of its variants) that require corrective methods. Low Growth hormone levels have been identified in another subset but it is unclear how much value replacement can achieve.

If they have a history of allergies or sensitivities (about one out four Americans), I believe that those areas should be properly addressed. Here a LEAP test to investigate abnormal mediator release mechanisms resulting in hemolysis is advantageous. This test is often not covered by insurance since it is not ‘usual and customary” but is more accurate than regular allergy tests in this disorder and is the Gold standard for finding food sensitivities that aggravate this problem. More information on the LEAP test is available from http://nowleap.com/.

IgE mediated or RAST testing may be performed initially but traditional food allergy tests correlate poorly with FM.

Even in non-allergic individuals, the diet is important in FM. Many patients have reported improvement on a Mediterranean type diet or vegetarian diet with the reduction of white flour and sugar or sweet products. Also eliminating smoking and alcohol use is recommended for general health purposes. In my practice the most important part of improving fibromyalgia symptoms is restoring the chronic imbalance of brain hormones (neurotransmitters). If there is a flaw in production or utilization of neurotransmitters genetically as demonstrated in recent studies, it is necessary to go back to the basics to understand another approach that may be relevant since the drugs are only partially effective. Serotonin is an important neurotransmitter in the brain and is equivalent to the Yin in the Chinese system of balance. Some is further converted into melatonin, nature’s sleep hormone. This relaxes you and permits better sleep. The energizing portion of the neurotransmitters, are called catecholamines and are dopamine, and norepinephrine. These help give you energy, alertness and can make you mentally sharper and are the Yang portion of the Chinese balance. Medications cannot produce more of these brain hormones. These neurotransmitters are made from certain amino acids just as our muscles and immune system, hair and nails are. These building blocks are the amino acids tyrosine and tryptophan, their nutritional cofactors and their metabolites. Thus the last and most important method to help FM sufferers is improved amino acid balance.

Just taking amino acids won’t help. By using a proper ratio of these amino acids (a patented process, M. Hinz MD) aggressively and applying neurotransmitter precursor therapy supervised by an physician trained in this method with proper urinary and clinical monitoring of the neurotransmitters and the organic cationic transporter 2 system there is significant improvement the neurochemistry. Relief of stiffness and pain is often reported by those taking these neurotransmitter precursors. Those with residual sleep disorders and depression usually also get better with this protocol but occasionally I may add small amounts of doxepin, amityptiline or other tricyclics.. Training in this method is available and growing in popularity.

No claims can be made for the products used in this method as they are not FDA approved medications. Rather the formula utilized is considered a natural product. Balancing these products is often more difficult than finding the proper dosage of medication so that even though they are natural the proper balance of the thiols utilized to restore the MAO system as well as the amino acid ratio and balance require expertise and measurements.

More information and physician training programs is available from http://neurosupport.com/.

With persisting depression, psychotropics in small amounts may be necessary but must be used with caution when administering neurotransmitter precursors. Psychiatric advice is sometimes required in severe cases,

By combining this holistic concept with gentle graded exercise and the methods mentioned above, a majority of fibromyalgia patients will clinically improve.

Stevan Cordas DO MPH FACOI, FAADEP, FACAAI

Director: Fibromyalgia Research Center

Clinical Associate Professor, University of North Texas Health Science Center, Texas College of Osteopathic Medicine

For more information 817-268-1757 www.drcordas.org