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Junco's Blog
Saturday, 21 March 2009
Beware The Fibromyalgia Diagnosis Part Two
Topic: Medical Care

Where Did Fibromylagia Come From?

Fibromyalgia used to be known as Rheumatism, a term more commonly used in the days of yore which referred to a rheumatological condition of achy muscles and joints with fatigue. In the mid-20th century the name was changed to Fibrositis. When it was later changed to Fibromyalgia the definition of the illness changed somewhat and its list of symptoms has greatly broadened and expanded over the years. The current list of symptoms and secondary ailments attributed to either being 'caused' by Fibromyalgia or being a co-condition to it still continues to grow. Fibromyalgia's primary symptoms include widespread muscle and joint pain with chronic fatigue, daily or frequent cognitive and memory impairments (brain fog), and a pair of sleeping disorders- insomnia, and the inability to reach or stay in restorative stage 4/delta wave deep sleep.

The secondary symptoms lists now includes: various digestive problems; irritable bowel syndrome; irritable bladder/interstitial cystitis; edema/fluid retention syndrome; dry eyes and dry mouth (Sicca Syndrome); gynecological problems in women; erectile dysfunction in men; painful sexual intercourse for both sexes, but this occurs much more often with women; chronic headaches; yeast infections/intolerances; depression and anxiety; restless leg syndrome; heart palpitations; dizziness and lightheadedness; balance problems; sinus problems/environmental allergies; delayed food allergies and intolerances; hypoglycemia; Raynaud's phenomenon (cold hands and feet); tingling and numbness of the limbs (neuropathy); mitral valve prolapse; thyroid disorders; endometriosis; TMJ; and various other ailments. The problem with this growing list secondary symptoms is these same conditions and symptoms also occur in many people on their own and have nothing whatsoever to do with a diagnosis of fibromyalgia. Many of these symptoms can also be associated with other illnesses and diseases, including those with symptoms similar to fibromyalgia, and that includes illnesses that are either occasionally or frequently mis-diagnosed as being fibromyalgia.

Some doctors and medical researchers make little or no distinction between Fibromyalgia and Chronic Fatigue Immune Deficiency Syndrome/Myalgic Encephalomyelitis (CFIDS/ME) an autoimmune condition caused by chronic viral infections which is also known as Chronic Fatigue Syndrome. Others in the medical profession view CFIDS/ME and Fibromyalgia as being separate, yet related conditions.

Fibromyalgia- The Medical Land of Confusion

Some in the medical community view fibromyalgia as a rheumatological disorder and others view it as a neurological one. A few say it is an autoimmune condition, but that premise has largely fallen out of favor. Some say the condition is mainly caused by the prolonged sleep disorders. Others view its cause as a combination of dysfunctions involving the thyroid, adrenal, and pituitary glands and/or the hypothalamus. Some view the problem as the retention of too much phosphate in the body due to a genetic defect. Some say it is caused by or is related to Attention Deficit Disorder/Attention Deficit Hyperactivity Disorder; while others view it as a form of Post Traumatic Stress Disorder. There is also a growing school of thought within the medical community which believes some/many/most fibromyalgia patients experienced physical and/or sexual abuse either during childhood or adulthood, and their illness is a psychosomatic response to the prolonged stress related to being victims of abuse. A few out there try to link fibromyalgia to the mental illnesses Disassociative Disorder/Multiple Personality Disorder via these physical/sexual abuse traumas. A few believe in a genetic link between fibromyalgia and autism. Some believe fibromyalgia is a form of Dysautomia- an autonomic nervous system dysfunction disorder. Others claim the cause is completely unknown (and some think the cause is irrelevant). Unfortunately, these conflicting views are the ones often most strongly favored in the medical community and bear the strongest influence regarding patient treatment and care.

Typically drug treatment involves taking antidepressants, anticonvulsants, pain medications, neuropathy medications, and possibly anti-anxiety drugs. In addition, fibromyalgia patients, depending upon both their doctors' viewpoints regarding illness treatment and the types of coverage their health insurance plans offer for fibromyalgia, may undergo physical therapy aimed specifically geared towards fibromyalgia patients, and/or may go to pain management clinics. They may be treated with various forms of therapeutic massage, and/or with chiropractic treatments. They are encouraged to take up a gentle lower impact exercise routine, which may include T'ai Chi or yoga exercises.

Other treatments for fibromyalgia (sometimes depending on whose theory you are following) may possibly involve:

Guifenesein Therapy- This treatment involves taking twice-daily doses of Guifenesin, an expectorant found in cold medicines, to rid the body of excess phosphates. This protocol also involves completely avoiding products which contain salicylates, both in oral form (Aspirin and Pepto Bismol, for example), and avoiding the use of skin care products that contain salicylic acid, including certain natural botanical extracts. A lower carb diet is also recommend with this protocol.

Cognitive Behavioral Therapy- This short-term psychotherapy helps patients learn to deal with the emotional aspects of living with chronic illnesses and to help them feel better about themselves as people living with chronic illness. It involves changing one's thinking and viewpoints regarding his/her illness and its life-impacting symptoms.

“Cognitive Behavioral Therapy for Fibromyalgia” a patient study article by Robert Bennett and David Nelson can be found here: www.myalgia.com/Treatment/Bennett%20Nelson%20CBT%202006.pdf

Cranialsacral Therapy- From Wikipedia: (links within text removed) “A craniosacral therapy session involves the therapist placing their hands on the patient, which they say allows them to tune into what they call the craniosacral system. By gently working with the spine, the skull and its cranial sutures, diaphragms, and fascia, the restrictions of nerve passages are said to be eased, the movement of cerebrospinal fluid through the spianl cord can be optimized, and misaligned bones are said to be restored to their proper position. Craniosacral therapists use the therapy to treat mental stress, neck and back pain, migraines, TMJ Syndrome, and for chronic pain conditions such as fibromyalgia.”   http://en.wikipedia.org/wiki/Cranial-sacral_therapy

There is some skepticism and controversy regarding the use and effectiveness of this treatment that is not just limited to its use for fibromyalgia patients.

Regulating Dopamine Levels- Rheumatologist Dr. David Dryland has developed a protocol to treat fibromyalgia based upon the viewpoint that fibromyalgia is the result of a decrease in levels of the neurotransmitter dopamine. His treatment involves off-label use of the drugs Mirapex and Requip to regulate dopamine levels. Mirapex and Requip are used to treat restless legs syndrome and Parkinson's disease, Parkinson's being a disease involving a decrease in dopamine levels.

 

Support Groups- Fibromyalgia patients are very strongly encouraged to bond with fellow fibromyalgics through either or both internet-based and real world local support groups, more so than patients who live with other chronic illnesses. Emotional bonding and support with fellow fibromites, and other emotional based 'issues' plays a much greater role within the concept of 'healing' for fibromyalgia patients. The number of online forums and message boards and all those patients posting to these fibro forums very much eclipses the number of forums (and patients) who focus on other illnesses and diseases. The sheer number of patients, and the growing number of newly diagnosed fibro patients who are now joining the “oldbies” at those cyber message boards, indicates just how much of a fad the fibromyalgia diagnosis has become.

Medical Marijuana- While it is more often prescribed for cancer patients, AIDS patients, MS patients dealing with severe pain, and the like; a few physicians will prescribe medical marijuana to their fibromyalgia patients although this practice is quite controversial.

Long-term Psychotherapy/Psychiatric Care- It's not usual to hear that someone who has been diagnosed with fibromyalgia is either in therapy with a psychologist; or even more common, is seeing a psychiatrist who has diagnosed the patient with, and is treating him or her with psychotropic medications for: depression, and/or anxiety, and/or ADD/ADHD, and/or Obsessive Compulsive Disorder, and/or PTSD. In at least one state, Fibromyalgia is listed as being a psychiatric disorder instead of a rheumatological one with that state's SSA Disability program. Hence is such states the primary care physician who may be assigned to the disabled patient and whose medical assessments, opinions and treatment plans counts most when it comes to that disabled patient's status and care via his/her Disability case workers is often a psychiatrist, not the patient's rheumatologist, or his/her general family practice doctor or whomever else the patient is receiving medical care from on a regular basis. All of these realities should give anyone who receives the fibromyalgia diagnosis themselves or who has a loved one who recently received this diagnosis pause. This is a glaring Patient Beware red flag.



Posted by juncohyemalis at 11:57 PM EDT
Thursday, 19 March 2009
Beware The Fibromyalgia Diagnosis Part One
Topic: Medical Care

Fibromyalgia is the current fad diagnosis for anything and everything that ails people, most especially women aged twenty-something to fifty-something. Any patient should beware when a doctor tells them the cause of their symptoms/illness is “fibromyalgia”.

Fibromyalgia isn't a distinctive illness, and it's not a disease; rather it's a Syndrome- a cluster of symptoms. The problem with fibromyalgia is its symptoms of chronic fatigue, widespread muscle and joint pain, and all the rest mimic various illnesses, and for good reason. Fibromyalgia is really a catch-all diagnosis for multiple medical conditions who present with similar symptoms.

In this day and age of managed healthcare, and with one-third of the US population either medically uninsured or underinsured, a catch-all diagnosis like fibromyalgia becomes a convenient money-saver for the medical insurance industry as it cancels out the need to run all those pesky and pricey medical tests which can tell doctors what is really wrong with their patients. Also, fibromyalgia is currently treated quite cheaply- with popular antidepressants, pain and sleep medications; a far cry price-wise from some of the long-term therapies needed if say, a patient's “fibromyalgia” is really late stage/chronic Lyme disease or is caused by chronic viral infections which require years of medication therapy involving either doses of multiple antibiotics (some given intravenously) or anti-viral medications, respectively.

 

Fibromyalgia: The “Disease” of Passive Victimhood

Fibromyalgia literature which is meant for both patient and physician consumption is filled with harmful psycho-babble and patient psychosocial profiling which paints fibromyalgia patients in a negative and harmful light. It often portrays them as being the “victims” of their own negative and self-defeating behaviors. In addition, supposedly many of these patients have been victimized, traumatized and were turned into passive doormats by the people in their lives, often starting from childhood. This kind of psychosocial stereotyping is certainly not in these patients' best interests and is simply not true personality- and psychosocial history- wise for most of them.

Spend some time perusing the fibromyalgia books at your local bookstore or library, and spend some time reading very carefully through some of the major fibromyalgia support organizational and fibro-expert physician websites and some of the poorly conducted studies supposedly linking fibromyalgia to abuse trauma. What you'll find, especially in the books and on certain websites, is commentary stating the 'suspected' causes of fibromyalgia are basically psychosomatic in origin and are either related to the emotional traumas of childhood physical and/or sexual abuse and neglect, or from being raped as an adult, or being the victim of adulthood domestic violence, or having a job-stress related burn-out disorder, or being an unhappy people-pleaser who burns the candle at both ends until it leads to illness, or being a Super Type A personality who takes on too much work and responsibility, or being too ambitious with career and educational goals; all of which supposedly causes adrenal-burnout that triggers fibromyalgia. Fibromyalgia patients are also supposed to be perpetually anxious, super-sensitive and super-vigilant people whose bodies are incapable of relaxing and are always stuck in a tense fight-or-flight mode.

The two exceptions to this mindset (sort of) involves fibromyalgia patients whose symptoms appear after suffering serious body trauma due to automobile, work related and other types accidents or injuries which cause nerve and tissue damage, especially to the back and neck (Post Traumatic Fibromyalgia); and with patients who suffer with other conditions at the same time that also cause similar symptoms to fibromyalgia aka so-called co-conditions like Lupus and Rheumatoid Arthritis. These patients are labeled as having Secondary Fibromyalgia.

All other fibromyalgia patients are defined as having Primary Fibromyalgia.

To a much lesser extent, negative behaviors like smoking, drinking too much alcohol, using illegal drugs, and poor diet are listed as mitigating factors for developing fibromyalgia. Actually these same behaviors are often used to scapegoat people who develop various chronic illnesses via the ignorant and unrealistic belief that everyone is destined to be perfectly healthy at all times until they reach old age, unless they do something 'wrong' like smoke, drink, abuse drugs, or pig out on junk food and fast food, which screws up their otherwise perfectly healthy bodies.

Aside from the fibro patients whose symptoms are triggered by body trauma caused by accidents (the cause of which isn't actually explained by most so-called fibromyalgia experts either) or is found alongside another illness like Lupus (the distinctions between a Lupus/Secondary Fibro patient subset and the problem simply being a really, really painful case of Lupus for certain patients isn't clear) all other newly diagnosed fibromyalgia patients are discouraged from asking questions about the 'whys' behind their illness. They are discouraged from looking for a cause that could potentially be cured, or at least better managed with the true and proper medications. Instead they are encouraged to passively accept their new-found status as fibromyalgia patients- aka fibromites or FMers. They are encouraged to work through the “Five Stages of Grief” and learn to accept their lot in life and join fibro support groups; take their antidepressant, anti-anxiety and pain drugs like good little girls and boys; and are told to consider going into or are placed in psychotherapy or cognitive behavior therapy. And if they have good health insurance coverage, they'll be able to see a physical therapist and/or a pain management specialist. And they'll spend their lives living in limbo wondering why their bodies don't work right anymore and why they don't ever get better. They'll be told their illness isn't progressive and isn't harmful and doesn't actually do damage to their bodies, so they shouldn't be alarmed. But some will become sicker and more disabled with time, and will have no answers about the true nature of their illnesses.



Posted by juncohyemalis at 1:56 AM EDT
Updated: Thursday, 19 March 2009 2:01 AM EDT
Saturday, 29 November 2008
Gender Segregated Medical Care
Topic: Medical Care

It can be difficult enough finding adequate and decent quality medical care, especially if you're uninsured, but it's worse when you're female and you're stuck dealing with gender segregation in terms of medical care, treatment, and diagnoses.

This is something you're more likely to come up against if you're a female of childbearing age, or are menopausal or immediately post-menopausal and your community hospitals and clinics are financed in such a way where women's health care greatly emphasizes ob-gyn care at the expense of other medical care. The protocols may be such that female patients' symptoms are either pretty much automatically preliminarily diagnosed, or are sometimes outright “labeled” as being gynecological and/or hormonal in origin without medical tests being run first, regardless of the true cause(s). The fact that a woman's symptoms or previous diagnoses don't point to something gynecological in origin becomes irrelevant. And non-gynecological illnesses and medical conditions may be de-emphasized or outright ignored, even when this is done to the detriment of the patient. Suddenly you are reduced to being medically viewed as just a walking and taking uterus and set of ovaries. What is going on with your cardiopulmonary system, musculoskeletal system, digestive system, etc., is irrelevant and doesn't matter.

Gender segregated care can also include harmful medical stereotypes- women of child bearing age can't and don't develop heart conditions and can't have heart attacks, women in their twenties and thirties who develop illnesses that sap their energy are just neurotic whiners and complainers, medical problems found in women their forties and fifties are all related to or are caused by peri-menopause and menopause, and the like.

Not all women who encounter gender segregated medical care are uninsured patients going to community hospital clinics. This happens to insured women as well. I knew someone who had insurance and suffered from several worsening conditions which were incorrectly blamed on peri-menopause, then menopause, which did eventually make her so weak and sick that she required hospitalization and a lot of care afterward.

 But it is indeed worse when you lack health coverage and you're stuck dealing with spotty access to medical care, while hoping to avoid gender segregated medical care when you do see a doctor..



Posted by juncohyemalis at 12:58 AM EST
Updated: Saturday, 29 November 2008 1:02 AM EST

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