Beware The Fibromyalgia Diagnosis Part Three
Topic: Medical Care

One Step Forward, Two Steps Back

More recent on the fibromyalgia medical scene- and with a much smaller number of fibromyalgia "experts" owning up to this- is the link between the fibromyalgia diagnosis and the reality that many patients are actually suffering from chronic bacterial or viral infections, or other environmental based illnesses. This seems like it would be a step in the right direction in sorting out the mess that is this 'catch-all' diagnosis called fibromyalgia, but it's not that simple...  

Illnesses that produce the same symptoms as “fibromyalgia”: Lyme Disease and it's various co-infections, including Ehrlichiosis and Bartonella; chronic viral infections including Epstein Barr, Cytomeglovirus etc.; and other environmental factors are being acknowledged as the causes of “fibromyalgia” in a rather roundabout way by some in the fibromyalgia medical community, but not by the vast majority. So in-turn some medical experts are calling fibromyalgia a neuromuscular pain amplification syndrome which is caused by combination of hormones, the immune system and those pesky bacterial, viral or environmental illness, all interacting with each other in a bad way, which makes people ill...with “fibromyalgia” or Chronic Fatigue Syndrome. And yes, they still throw in the psychological stress related component to this. After all, more women are diagnosed with fibromyalgia then men, although male patients seem to be slowly gaining ground on females in terms of being diagnosed with FM or CFS, so the 'flaky and emotionally messed-up woman' component to fibromyalgia's causes stays put within the parameters of this revised understanding of fibromyalgia. Ditto with the 'physical/sexual abuse victim' component.

Hitting the Books

In the third edition of Jacob Teitelbaum's book “From Fatigued to Fantastic!” the bacterial, viral and environmental causes of Fibromyalgia and CFIDS are discussed. Dr. Teitelbaum makes the admission: “Indeed many excellent physicians feel that the large majority of CFS/FMS patients have Lyme Disease.” on page 145 of “From Fatigued to Fantastic!”.

Dr. Teitelbaum also acknowledges the limitations of the current Lyme tests to detect all cases of Lyme and apparently supports the ILADS protocols (without actually mentioning ILADS) for diagnosis of the disease and for prolonged antibiotics treatment for Lyme patients. This seems like it should be a bombshell admission!  Keyword here is 'should'. He also acknowledges the four known viral suspects behind other cases of Fibromyalgia and CFIDS, as well as other bacterial, viral and environmental agents, and even lists medical tests he recommends his readers have their physicians conduct to test them for these various bacteria, viruses and other agents. In a way this is progress, but certainly not what one would hope.

Beyond Teitelbaum's book, and one or two others who mention Lyme and it's co-infections, and chronic viral infections in regards to the Fibromyalgia and CFS diagnosis, there is just Dr. Daniel Dantini... Dr. Dantini's book, ”The New Fibromyalgia Remedy”, is a refreshingly psycho-babble free book dealing with the chronic viral and delayed food allergy causes of Fibromyalgia and CFS. He also discusses various conditions with similar symptoms to Fibromyalgia and CFS. His assessment plan, after ruling out other medical conditions and diseases, involves testing the patient for the viruses: Epstein-Barr, Cytomeglovirus, Herpesvirus 6, Human Parvovirus B19; as well as for delayed food allergies. Treatment involves anti-viral medication regimens to hopefully knock the found viruses into remission; plus dietary changes to eliminate troublesome foods from the patient's diet for a while, then to gradually reintroduce these food's back into the diet, one at a time, so the patient's body will learn to stop reacting inappropriately to these foods. Sadly, Dr. Dantini's contribution to understanding the viral root causes behind the fibromyalgia and CFS puzzle goes largely ignored by many medical professionals and patients in the FM/CFS community, particularly with the fibromyalgia half of the equation. You will not see his book, his work, his research findings, or the success stories culled from his own patient files touted on fibromyalgia awareness and advocacy websites, nor will you find them mentioned at your typical online fibromyalgia support group/message board.

The rest of the Fibromyalgia books on the market completely ignore the fact that some researchers and doctors are beginning to understand and to publish medical studies which prove that “fibromyalgia” (an all-purpose umbrella label) is in fact various different illnesses and diseases, including chronic and persistent bacterial and viral infections, which have similar symptoms. Instead most fibromyalgia books completely ignore the germs and focus solely on pain medications, antidepressants, sleep hygiene, gentle physical exercises, various changes in diet, the use of vitamins, minerals and other supplements, and power-of-positive-thinking, stress-reduction and cognitive behavioral type approaches.

Note: If you want to understand the hows and whys behind Lyme Disease and it's fellow tick-borne infections being so often mis-diagnosed and mis-classified as fibromyalgia and CFIDS, read both Patricia Weintraub's “Cure Unknown”, and Constance Bean's and Lesley Ann Fein's “Beating Lyme”.

But, even with a little bit of progress appearing on the fibromyalgia front, there are major caveats here as well:

For one, Dr. Teitelbaum also supports the psychological trauma hype as a causative factor behind fibromyalgia. His website features “Book Notes”- supplemental articles and letters written by him and/or other writers on subjects pertaining to the chapters of his books. Among the Book Notes for “From Fatigued to Fantastic!” is an article of the subject of the evolutionary aspects of fibromyalgia, “Stone Agers in the Fast Lane”, written by Jeff Maitland Ph D. Some quoted excerpts from Dr. Maitland's lengthy essay appear below:

He also recognizes that most chronic fatigue patients are type-A personalities and that their perfectionism, their need to control, and their drivenness to succeed are ultimately rooted in the development of low self-esteem in childhood coupled with the feeling of not being able to defend their emotional boundaries....

Fibromyalgia is not a disease in the usual sense, it is a fear disorder based on a genetic quirk. It is a maladaptive fear response that results when unrelenting stress and trauma, destructive parenting, and/or childhood trauma are coupled together in a highly sensitive individual who pursues the futile attempt to live in a chaotic world at odds with his or her bodily and psychic resources. Since fibromyalgia begins as a maladaptive fear response, it begins as a central nervous system disorder that then spreads to the entire body, but especially to the endocrine and immune systems....

Fibromyalgia can be divided into two broad and sometimes overlapping types, posttraumatic and primary....Even though posttraumatic patients may not always exhibit the same psychological and emotional precursors that patients with primary fibromyalgia do, both types are clear examples of a chronic fear condition. For both types the world has become a fearful place.....

As Dr. Teitelbaum points out, most primary fibromyalgia patients have low self-esteem; they are perfectionists who are driven to control their world and succeed in it. As he said in a lecture once, most of these patients, even if they were to receive four Nobel prizes, would still think they hadn’t done enough. Due to their low self-esteem many have a fear of being seen as weak. As an unconscious strategy to get the approval they never received as children, they become driven overachievers and perfectionists. As a result, they burn out in the futile attempt to feel good about themselves by seeking external approval. Their low self-esteem is sometimes the result of having been abused or made to feel inadequate by destructive parents or significant care givers....

Like the abused experimental animals and many battered women, people with fibromyalgia have lost the ability to protect themselves and do what is best for their own well-being and happiness. Many unconsciously believe that they were the reason for the abuse that they suffered as children. As adults they often think that they are the cause of other people’s outbursts....Like most people with fear disorders, they suppress and deny their fear and, as a result, block their ability to trust. Unable to trust they often find themselves unable to open to the love we all want and expect.....In the end, they are only looking for someone to give them the love, support, and sense of safety they never had. For only in a safe therapeutic environment is it possible for traumatized individuals to appropriately discharge their highly tuned states of sympathetic arousal....

Since fibromyalgia is a fear response rooted in unresolved trauma and/or relentless stress that is constantly being triggered by the patient’s world, it goes without saying that a form of psychotherapy that is capable of discharging chronic sympathetic arousal is an extremely important part of the treatment program.

(Jeff Maitland Ph D, “Stone Agers in the Fast Lane”) http://www.endfatigue.com/book_notes/Fftf_chapter_10.html

This viewpoint isn't at all unusual regarding the stereotyping of the so-called typical fibromyalgia patient. It's actually very much the norm, and the same psychosocially negative wording and phrasing which indicates personality and character flaws, and emotional/psychological dysfunction and disorder appear repeatedly in medical literature geared for the medical and social service professions. Watered down versions (containing much of the same loaded buzzwords and phrases) is typically found in literature published for patients and their loved ones. The only fibromyalgia book I've seen personally which is free of this negative stereotyped language and attitude regrading patients with FM/CFS is Dr. Dantini's book. His is the lone voice in the world of fibromyalgia book authoring who views and treats these patients with dignity, without belittling or demeaning them via tired, harmful, and archaic stereotyping.

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-20^th 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.

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.

Cure Unknown by Pamela Weintraub
Topic: Book Reviews
“Cure Unknown: Inside the Lyme Epidemic” by Pamela Weintraub, St. Martin's Press; New York, New York;  2008. 

“Cure Unknown” is another must read book about the real science, real required medical care for patients, and the ongoing research behind Lyme Disease and its related tick-born co-infections and how it all has been greatly obscured and even buried due to politics, conflicts of interest, and narrow-minded thinking on the part of some well-connected doctors and medical researches who sadly have too much clout within the medical establishment and the government. This has been done at the expense of Lyme patients, their families and the devoted doctors and researchers on the front lines of Lyme patient care who know some uncomfortable truths about this not fully understood and very stubborn bacterial disease.

Ms. Weintraub is another on the list of journalist-patients to research and write about her and her family's illness after suffering for years with inadequate care due to the fact efforts are being made to stifle the true number of Lyme cases in this country and thus deny sufferers full and proper medical treatment. Lyme is the only disease in this country where it is deemed fully acceptable to deny patients much-needed medical treatment to make them well, or to at least slow down the progression of the more stubborn cases of the disease. It is the only disease where governmental bodies have placed limits on the duration of antibiotic therapy and where state medical boards actually attempted to revoke, or did revoke, the medical licenses of doctors who did their jobs- treating their Lyme patients for as long as it took them to get well. 

This book is also important reading, and food for thought, for anyone involved in the current explosion in the diagnosis of “fibromyalgia”, whether they are working in the fields of medicine or social services, or they are a fibro patient or the friend or relative of someone diagnosed with fibro, especially if they have doubts or questions regarding the accuracy of the fibromyalgia diagnosis; as fibromyalgia, (formerly known as muscular rheumatism and later fibrositis) had its illness definition and symptoms list greatly expanded to include symptoms often found in late-stage and chronic Lyme (sometimes erroneously called Post Lyme Syndrome). Fibromyalgia has become such a fad diagnosis of late that it seems to be a catch-all label which covers a broad range of medical conditions- including Lyme disease- illnesses whose main symptoms include chronic fatigue, and widespread muscle and joint pain.  A somewhat similar occurrence has happened on lesser scale with late-stage and chronic Lyme being incorrectly labeled as Chronic Fatigue Syndrome, Multiple Sclerosis, or Amyotrophic Lateral Sclerosis (ALS a.k.a Lou Gehrig's Disease).  

The Myth of Chronic Illness as a a??Blessinga??
Topic: Life With Chronic Illness

Every so often I read essays online about this, written by chronically ill people, and I know this has been a chapter subject in at least one book on living with chronic illness- the absurd notion of chronic illness as a “blessing”, or a 'blessing in disguise'.

The writer, usually female, is still able to live a middle class lifestyle despite her illnesses. She suffers from one or more chronic ailments of the invisible illness variety, but she is lucky enough to have health insurance coverage either privately through her spouse or through Disability, and has decent and caring doctors who do a good job at manging her conditions. She is happily married to a nice, understanding and patient guy who is earning a good income- hence she doesn't really need to work, so her inability to do so anymore is a moot point. She has amazingly understanding and supportive family members and friends, and a large extended illness support system. And she gushes about how “blessed” she and everyone else with chronic illnesses is. To her, chronic illness gives one 'proper prospective' of what really matters in life, and supposedly all that matters in life is having great interpersonal relationships. It's not about the practical issues like money, jobs/careers, raising a family and/or caring for aging family members despite being chronically ill, having decent quality housing, having access to consistent and decent quality medical care, being able to own and maintain a reliable car if one can drive, being able to save for the future, having more of a purpose in life than playing at being the blissed-out yet ill housewife (if one is married). She claims that illness is really a blessing in disguise. If she's a religious type, life with chronic illness will be a spiritual matter that's part of a greater 'Divine Plan'.

Oh, please. Get real.

The reality is, especially here in the United States, developing life altering/disabling chronic illnesses (especially is you're single and/or female) often equates moving from a stable middle class or working class lifestyle to the world of poverty and potential homelessness, and leads to an overall diminished quality of life. People who are able to remain in the workforce often get stuck in job ruts as they need to stay with an employer where they can still get health care coverage, because they are uninsurable on their own. For those unable to work in the traditional workplace, transitioning to a telecommuting job is often difficult at best. Getting on Disability is extremely difficult, and many chronically ill/disabled people who very much need Disability coverage never get it. Instead they either wind up living on welfare until the welfare reform term limits kick in, or they rely on their spouse, lover, family or friends for housing and financial support. Some wind living in welfare hotels, or end up as members of the disabled homeless population, living in homeless shelters or out on the streets.

Housing for the disabled apartment renter may mean relocating from their nice, safe and clean neighborhood into a public housing apartment building located in a dirty, dilapidated, drug and crime infested neighborhood where burglaries, car thefts and break-ins, muggings, rapes and shootings are the norm. State Medicaid programs are being gutted constantly, so far too many chronically ill/disabled people wind up with extremely limited or no access to decent quality medical care. Some community hospital clinics are so awful, have such substandard and poor quality care, that their patients would be better off being treated by their local veterinarians.

Love relationships and marriages may break up when one partner becomes chronically ill, and the healthy one loses the ability to handle the stress and strain associated with caring for their ill partner. Personal and professional goals, dreams and ambitions often go unfulfilled. Family members and friends often don't 'get it'...and some will never understand what life with chronic illness is like, regardless of how many times you try to explain your daily struggles and hardships to them.

Where is the “blessing” in that?

Patients Like Me
Topic: Life With Chronic Illness

Patients Like Me http://www.patientslikeme.com was recently profiled on the CBS Nightly News with Katie Couric and has been the subject of print news articles.

This website is a place where patients with certain chronic diseases, including progressive illnesses- some fatal- can chart their symptoms, illness progression, medical treatments and other means of coping with their conditions. The information they provide, including which medications they use and how well they help are shared with pharmaceutical companies and medical researchers, minus the site members' personal real life information- real name, location, etc.

 

Members can track progress of others members, and see which medications and therapies are the most helpful for the members of their illness community. There are sections that list the major and lesser symptoms of each illness and track the number of members who report each symptom. There is a section devoted to medical research studies and news as well. The Patients Like Me site has a limited selection of chronic conditions at present, but will be expanding to cover more illnesses.

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..

The Poor Have Medicaid, The Chronically Ill/Disabled have Disability, and Other Popular Myths
Topic: Public Policy

About forty-seven million people in the US lack health insurance coverage. I wonder how many of these people are chronically ill/disabled who can't get on Disability even though their medical conditions are on the Social Security Administration's list of qualifying disabling conditions? How many would be or should be able to qualify for Medicaid through their state, but can't because their state gutted their Medicaid program, or because they are childless or have grown children and live in a state where Medicaid only covers families with minor children? 

For far too many of the chronically ill/disabled the idea of Disability serving as a safety net is a joke and a hoax. I wonder how many people in this country who have qualifying disabling conditions are being denied Disability and are instead shunted onto Welfare, their health conditions largely ignored? 

In how many states have the rules and “games” regarding Disability eligibility become downright cruel for those suffering from life altering medical conditions? How many people are living with untreated and unmanaged conditions which are being allowed to worsen, which can include living with chronic pain and discomfort, that degrades and destroys their quality of life and will ultimately shorten their lifespans, all unnecessarily? 

I live in a state where the rules are rather strict and stingy regarding who can qualify for Disability. A majority of the illnesses listed on the Federal SSA list of Disabling Conditions don’t apply in this state, and a number of them are completely ignored when it comes to the state Medicaid program, which is one of those only-for-families-with-minor-children set-ups. The ‘unofficial’ rule, the 'game' you're expected to play for Disability eligibility is: Working aged adults who become chronically ill/disabled, who aren’t either HIV+, or terminally ill and expected to live no more than 12 months, are basically expected to have themselves “diagnosed” with some type of mental illness in order to qualify for Disability. That’s the way it goes. Either fake a mental illness or you likely won’t be able to get on Disability. It's the way the game is played. So it becomes decision making time, play the game and fake a psychological/psychiatric problem, or go without care. Yeah, it’s a tough choice, but it’s a game some of us won’t play, so you learn to go without and have extremely spotty access to the most basic of medical care even though it’s to the detriment to your health.

Is it even Federally Constitutional to have a State’s Disability system set up this way, especially considering there are legal implications involved to a mental health diagnosis that don’t exist when you’re talking about all other illnesses?

Do an excellent job at faking a mental illness and worst case scenario- you’ll wind up in a locked psychiatric ward, heavily drugged…even worse- you could be judged mentally incompetent. On the other hand, do a great job at faking a bad back and the worst that will happen to you is you’ll have an MRI, be given cortisone or a pain killer, and you’ll undergo physical therapy. Big difference there, isn’t it? 

What exactly are the medical and legal implications to being diagnosed as too mentally ill to work- too mentally ill to be a self-supporting, fully functioning member of society? Obviously these issues must be awkward enough for the genuinely mentally ill to deal with, but what exactly are people who are faking a mental illness in order to get on Disability because they cannot get on it via their true medical conditions really getting themselves into?

When people fake a mental illness for Disability eligibility, do they wind up having a Psychiatrist as their assigned Medicare/Medicaid primary care physician? Are they less likely to end up seeing the specialists they genuinely need, such as a rheumatologist, an orthopedist, or a cardiologist? Are they pushed or forced to take psychotropic drugs that they don’t really need and shouldn’t be taking in the first place, even if they experience negative or uncomfortable side-effects? Are they more likely to be unnecessarily placed on tranquillizers? Are they more likely to have their real medical conditions ignored- improperly or inadequately treated, or not taken seriously- because of their mental illness status? Do they lose some of their autonomy and decision making abilities regarding their medical care in ways that don’t happen to those diagnosed with other illnesses? Can they, under certain circumstances, lose their right to refuse certain types of treatments or therapies because of their mental illness label? 

Does anyone in State government who pushes chronically ill/disabled people to have themselves diagnosed with faux mental illnesses in order to qualify for Disability ever pay attention to what the consequences are for these people? How do these consequences play out when the disabled person ‘faking’ a mental illness is young and/or very much undereducated- someone not fully understanding of the gist of these implications? 

Why is it often easier and faster to be granted Disability for mental illness than other medical conditions? I'm not talking about serious mental illnesses like schizophrenia, or severe cases of post traumatic stress disorder diagnosed in soldiers returning home from war... It's much easier for people in some states to get on Disability with a general depression or anxiety diagnosis then for those with painful and disabling rheumatological, respiratory, and cardiac conditions. Yes, I understand that some people have such severe forms of depression and anxiety that they cannot function properly at all in their lives, cannot function well enough to hold down a job; but is it fair to have a system where any mental health issue label, even flimsy ones designed 'just' to get someone on public assistance, can automatically result in an “Approved” stamp on a Disability application, while people suffering from disabling physical ailments are turned down? And some are forced to spend years fighting for eligibility, and may never be approved anyway? 

We have a system in some states that actively encourages game playing, illness diagnosis faking/swapping for eligibility, and adds a definite sleaze factor when it comes to getting the chronically ill/disabled with physical ailments on Disability. This is something that needs to change.  

Book Review- "Beating Lyme"
Topic: Book Reviews
“Beating Lyme: Understanding and Treating This Complex and Often Misdiagnosed Disease” by Constance A. Bean, with Lesley Ann Fein, MD, MPH; Amacon; New York; 2008.

This is a must read book for anyone who has Lyme, has been treated for Lyme, suspects their chronic ailments may be caused by Lyme, or who knows or loves someone who has or may have Lyme Disease.  

“Beating Lyme” is a helpful introduction into the facts surrounding Lyme Disease, its history, its often devastating symptoms, it's potential co-infections, it's frequent under-diagnosis or misdiagnosis; and the petty, mean-spirited, destructive and often arbitrary politics involved with its “official” diagnosis and treatment protocols established through the ISDA, the Infectious Diseases Society of America.

If you've ever wondered, “Whatever happened to the Lyme vaccine?” the troubling answer to that question can be found within this book as well.
   
For me personally, “Beating Lyme” was the most important book I've read this year. I lack health insurance and live in a state where people with Lyme cannot get Disability or medical help from the state. I live with untreated chronic Lyme and have done so since the mid 90's despite the fact I had a positive Western Blot Lyme test in 1994, whose results I was repeatedly told to ignore by the physicians I had seen. It couldn't be Lyme. I was told to ignore the test result and my symptoms, and they would all go away.  

My initial Lyme symptoms, which included Lyme Disease caused Mitral Valve Prolapse, and assorted other cardiac problems (suspected pericarditis, extremely rapid heart rates, abnormally slow heart rates, chest pain that sometimes required treatment with sublingual nitroglycerin pills, assorted types of arrhythmias, and skipped beats) which landed me in the hospital multiple times; along with extreme fatigue, muscle and joint pain, arthritis, swollen and painful lymph nodes, shortness of breath and lung problems, dizziness and lightheadedness, vertigo, digestive and swallowing problems, high suceptability to infection, were often downplayed and I was frequently belittled by my doctors and a few of the nurses. There were times when I was so weak and sick I could barely move. I was in my twenties then, and was 'reminded' on multiple occasions that women in their twenties- women of strong, moral character- simply did not become seriously ill. Worse, I had heart problems- a man's disease. Women, particularly younger adult women, simply cannot have heart problems, I was told. It simply didn't happen. So I was berated on occasion for having cardiac problems, accused of overdoing with the caffeine despite having the newly minted MVP diagnosis, and there were hints that I might be using drugs (I've never used or abused drugs, I've never used an illegal drug in my life), and that's what was behind my heart problems. Even their repeated blood tests that confirmed I wasn't consuming any caffeinated beverages and never took anything beyond Tylenol or ibuprofen, and the heart medications I was prescribed didn't quell those suspicions. The mindset was- I must have been at fault, I must have been doing something wrong to have a heart condition with serious cardiac symptoms. 

I have now lived for fifteen years now with untreated, chronic Lyme, which is a progressive and life-altering illness for me. I am one of the ones who eventually had the “fibromyalgia” label pinned on me even though I don't have the give-away FM symptoms of insomnia/sleep disorders and daily brain fog, nor do I have restless leg syndrome, yeast infections, dry eye/dry mouth problems, interstitial cystitis, ADD, etc., etc that are common with fibro. The state I live in will not provide Disability, or health care for the uninsured for those labeled with fibromyalgia either.  

Reading “Beating Lyme”, reading Constance Bean's struggles with her Lyme Disease diagnosis and treatment and excerpts of other patients' struggles with their Lyme was a major revelation for me. Here I was- mistreated and sometimes even outright ignored medically, my family members told to completely discount the seriousness and severity of the nightmare I had gone through (even though in the early days, I had been hospitalized with heart problems several times, and even spent several days in ICU!) and I still live with; but at least now I feel somewhat less alone with my personal struggles with this illness, as I see there are many people out there who have gone through and live with the same things I did and still do. My supposed “freak show” symptoms that couldn't and didn't happen to other people- not to people of good, strong and moral character- are sadly in fact the norm for a whole lot of us, and this doesn't make us morally weak or “bad” people. So for me as a medically ignored and untreated chronic Lyme Disease sufferer with no health insurance coverage, at least this book provides some long overdue vindication regarding the seriousness of the symptoms and the progression of my illness.

Book Review- "Life Disrupted" by Laurie Edwards
Topic: Book Reviews
“Life Disrupted: Getting Real About Chronic Illness in Your Twenties and Thirties” by Laurie Edwards, 2008, Walker & Company; NY, NY 

Laurie Edwards is a journalist and educator in her late twenties who has lived with chronic illnesses since childhood. “Life Disrupted” is about the delicate balance of having as full a life as possible despite chronic illness mixed in with hospital stays, doctor visits, medical testing and treatments. Laurie chronicles her story, as well as the stories of others in their twenties to mid-thirties who are living with chronic illness; managing college, careers, relationships, marriage and parenthood. Most of the patients profiled have been dealing with chronic illness since childhood. Laurie also shares her parents’ stories- they themselves have battled chronic illnesses throughout adulthood. 

This is an optimistic, hope-filled book, which has something to offer for anyone who has a chronic illnesses or who loves someone who does. While the main emphasis is on life for chronically ill adults in their twenties and thirties, this book is insightful for all chronically ill adults regardless of age who are struggling with work and career goals, relationships, family issues, and balancing marriage and parenthood with chronic illness.
 
One especially hopeful sign on the college education front is a growing number of colleges and universities are working with chronically ill students to develop coursework adaptations which will allow these students to be able to attend college and earn their degrees despite suffering from life-altering chronic ailments. 

The book ends with an appendix of resource websites in various categories including: employment, education, health insurance and advocacy, as well as sites for family members and chronically ill teenagers.
 
Laurie, her family and friends represent the best-case scenario, or at least the better-case scenario when it comes to managing life with chronic illness- they have access to quality healthcare and much needed specialists, they have health insurance coverage (most of the time anyway), they have employers who are willing to work with them to accommodate their health situations, or in the case of one woman she left her office job to start a small homebased business while having a spouse with a traditional job. The one person who was forced to leave her job due to her illness is married, so she has both financial support and health insurance coverage through her husband. Laurie and her friends may not be making as much money as they would if they were perfectly healthy, but they’re not living in poverty, are not going without access to decent quality healthcare, and aren’t mired down in the social services system. They’re not stuck fighting for Disability benefits or struggling to get by financially on the meager amount of financial support Disability gives, nor are they among the disabled/ill stuck on welfare. None are living with and are being supported by relatives or friends, or are part of the disabled homeless population. What we very much need in our society is for more chronically ill adults to have education/career/job/healthcare/relationship/family outcomes that are as positive, hopeful and productive as Laurie’s and her friends’ lives.