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Clear, concise and courageous. But bittersweet given the best advice for improvement.
on January 7, 2012
In my opinion, Dr. Liptan does a great job at presenting information in a very clear and basic manner. It was apparent to me shortly into the book that Dr. Liptan is a true patient advocate and is certainly not out to recommend any fad approaches and take our money! She does not offer false hopes or make any unrealistic claims- and she does not hesitate from politely criticizing those professionals and others who are marketing products or services that are questionable and/or clearly do not work. Note: In addition to her professional credentials as a medical doctor and adjunct professor at a research university, Dr. Liptan developed fibromyalgia just prior to her second year of medical school.
Here are some often asked questions about fibromyalgia with corresponding answers as translated from Dr. Ginevra's book:
What is at the root of fibromyalgia?
A malfunction in the regulatory processes that occur deep within the brain. It is in this area that the that master controller to the body's pain and stress response systems is found. For the individual with fibromyalgia, these systems become stuck in an overactive mode. From the book:
"Chronic overactivation of the stress response in the brain starts a chain reaction leading to poor deep sleep, muscle pain, and fatigue. Ultimately, all the symptoms of fibromyalgia stem from abnormal activation of the fight-or-flight nervous system."
What are the likely causes of fibromyalgia?
The start of the fibromyalgia chain reaction is likely a genetic predisposition along with a triggering event or two (e.g. accident, PTSD, childhood trauma and major illness). However, she notes that some individuals cannot seem to identify a triggering event.
Can individuals' "stress response systems" be returned to their prior states? Can fibromyalgia be "cured?"
No. From the book:
"We have not found a way to reverse the fight-or-flight dominance in fibromyalgia permanently. Once we find that, I think we will have discovered the cure to fibromyalgia. The best we can do for now is treat the problems caused by fight-or-flight dominance and try and encourage the nervous system to shift into rest-and-digest mode whenever possible."
Dr. Liptan states that her fibromyalgia is only about 10% of her most severe level, though she is clear that her symptoms can worsen if she does not partake in her particular self-management steps.
Here's my note of discontent:
The drug that Dr. Liptan speaks so highly of (Xyrem or sodium oxybate)- in fact, the only drug noted to actually shut down the fight-or-flight system at night so that deep sleep is possible, is not available to the vast majority of fibromyalgia sufferers. Dr. Liptan's use of the drug for fibromyalgia was off-label; more important, the drug costs over twenty-thousand dollars a month! My inference from her writing is that she likely would not be where she is today in her recovery had she not had access to this drug. Dr. Liptan states how paramount (deep) sleep is as the foundation to system improvement and is the starting point in fibromyalgia patients. Sadly, for the vast majority of us without access to this medication, we are not treating the true source of the problem, and therefore are unlikely to produce significant symptom improvement.