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.
