I had been searching high and low for a comprehensive guide to living life alongside fibromyalgia-- one that was well-written, researched, and didn't lump the disorder into a wastebasket diagnosis (an illegitimate diagnosis), or one of outdated information, but one that acknowledged FM as a real disorder of the nervous system. Most books I've come across touted glamorous claims to "cure your fibromyalgia!". Now, if you've done your homework on FM, you'll know that this is false advertisement. Not to say that there are not promising treatments and remedies out there that may vastly change the way one feels daily...
The Fibro Manual is a book written by doctor, advocate, and patient of fibromyalgia, Ginevra Liptan. Dr. Liptan found out that she had fibro while she was in medical school. The struggles she went through, she decided to endure silently, realizing how stigmatized the views of the disorder were among her fellow students and teachers/doctors. The pain she went through physically and emotionally drove her to reveal that she was in fact a sufferer of fibro at the end of her education, and also pushed her to become an advocate for the community, that is unfortunately so often victim to medical profiling. Ginevra decided to "come out" on her last day of residency to her fellow doctors, revealing that she too was someone with fibromyalgia. I can agree that telling people about my fibromyalgia has so much felt like "coming out". Coming out with an illness people cannot see, nor likely don't understand, is nerve racking even when telling closest family members and friends.
Dr. Liptan tells readers what fibro truly is, and what it isn't. Presenting the facts that FM has been found to be a highly overactive sympathetic nervous system. The sympathetic nervous system (fight or flight) gets stuck in an overly active mode which tells the sufferer that they are feeling pain. In fibromyalgia brains the hypothalamus gets stuck in "stress mode", in other words constantly sending signals to the brain that the body is in pain, even when there is no external stimulus. This is a simplified summary of course, Dr. Liptan goes into this concept much deeper with studies and findings. This response pattern is also cyclical, in that when certain hormones are excreted due to perceived stress, the result is tenser muscles and even more overactivity in the sympathetic nervous system, with a sort of hypervigilance (constantly being readied for a high stress event). I find this happens for me; that when I am not in a current flareup, I am "waiting for the other foot to drop". There is not a cure for fibromyalgia, because in essence there would need to be a way to "reset" the hypothalamus. Since we cannot reset our brains, Dr. Liptan says we can instead reset the way we deal with the pain and symptoms. This is where she introduces her four step approach to coping better with fibromyalgia.
The bulk of the advice given in the book is reliant on the sequential order of the steps we take to support our bodies with what they need, in a bottom-up manner (starting specific, moving to general). In other words, you cannot build on to step 2, if step 1 wasn't properly in line. Since fibromyalgia is such a complex disorder, with at least one problem occuring in almost every bodily system, attacking the symptoms from an all-over holistic manner has actually proved to be ineffective, you will not see the same benefits and relief by approaching health like everyone else. The key factor for this program being efficient is the focus on one system at a time. Which I think is rather different than I've typically heard as a FM patient.
Usually people, doctors, family or friends, or whoever means well...can hit us with a lot of "advice". "Oh well, you need to consume as much fiber as you can, do yoga thrice a day, drink double your body weight in water, get copious amounts of sleep, while also being a productive human who is able to lather themselves in essential oils on the half-hour." Okay that's a bit dramatic, but typically for me in my experience, there is so much advice out there, and it all comes at me a bit too quick, not to mention a lot of it is contradicting. Not only is it hard to implement all these topics into my life at once, but along with fibro fog and fatigue...it's honestly a bit of a catch-22. How is one supposed to go to school, run a blog, exercise, eat super fresh, and implement all these therapies, without sacrificing the first and most important factor in having fibromyalgia? Sleep. Which is why I appreciate the fact that Liptan addresses this topic at the forefront of her program.
The first part being Rest. The Rest portion of the book addresses the topic of the importance of sleep for fibromyalgia. I am sure many of us have already heard that the sleep in that of FM patients is worse than other people. This is an understatement in reality, being that FM patients actually rarely hit a stage of sleep referred to as deep sleep for more than a minute at a time! *Gasp*. She likens this to us FM patients sleeping with one eye open. If our bodies are not properly rested how are we to absorb the nutrients from the whole diet we are eating? How are we do to benefit from exercise when our bodies cannot properly recover from the stress of exercise? Among the remedies Dr. Liptan provides for sleep, she also includes the possibilities that some medications we already take could be interfering with sleep. She speaks about improving sleep habits, and even the possibility of adding certain medications, if the rest doesn't work. There is discussion of the importance of certain supplements we may need, including GABA, which is vital for slowing nervous system messaging in order to get restful sleep (p. 75). She speaks about the actual scientific findings on the efficacy of hyped supplements, such as melatonin. Which has always been of interest to me. Seeing if it is really all hype, or if it can be effective at the dosing and delivery method given. There is so much more to mention about this section of the book. I will end however, with my favorite comparison she gives of the lack of deep sleep that FM patients get:
"The constant state of sleep deprivation leaves the brain and body starving for deep sleep--the most "nutritious" form of sleep, the "broccoli" of sleep. Light sleep is like Twinkies: calories but no nutritional value. Fibromyalgia muscles are surviving on Twinkies and don't get enough of the good stuff, which leads to pain."
The next portion of the book is about Repair. This section includes several chapters spanning the topics of digestion, therapeutic movement and unsticking the fascia (which I will go into depth more on in a different blog post!) The digestion bit includes topics on leaky gut, inflammation in the body, certain medications that can affect healthy digestion (hello NSAIDs and antacids!), and IBS and how it relates to fibro. Therapeutic movement includes things like light exercise, moving in a realistic manner. Really stressing the importance of a proper warm-up for those with fibro. It is a lot longer than you'd think!
My favorite part in the Repair section of the book is that Ginevra is working at the smallest level with clients and have them build very slowly, so that fatigue doesn't keep them out of activity for days afterward. If we attack exercise the same way others do, we will inevitably get flareups immediately afterward, and then there is no activity. We want to avoid the sedentary lifestyle. Even if it means "baby mouse pace" (my description (-; ). Dr. Liptan goes on to tell us the benefits of unsticking our fascia. I would like a whole different blog post to go into this topic as it is quite nuanced and takes a little bit of explaining. Point being, there is a method developed by a physical therapist, called myofascial release therapy (MFR). It helps "unstick" the areas of fascia (a type of connective tissue that wraps around all our muscle fibers and organs) through gentle, sustained therapy by a trained professional. This method of massage therapy has been proven to be more effective in those with FM, compared to other modalities (think Swedish or Deep Tissue massage).
Following the Repair section comes Rebalance.
"Fibromyalgia muscles have lower than normal amounts of the energy-carrying chemical ATP", (responsible for carrying out energetic functions) and people with fibromyalgia have a reduced tolerance for exercise, with muscles that easily fatigue. Improving the ability to produce energy from nutrients is a key factor in restoring balance and reducing fatigue and muscle pain."
In other words, there is "not enough gas in the tank", to fuel our energetic needs. Think about your body as a network. If there is a glitch in one place, it will affect other areas of function. In FM, Ginevra points out that because we are in a constant stress response, our mitochondria in our cells do not produce "fuel" efficiently. There are ways Liptan discusses how we can improve our energy, which include nutrients from foods, aerobic exercise (eventually), certain supplements and reducing inflammation (including Vitamin D, CoQ10, others), which has a chapter all on its own. She even goes further into depth in this section addressing thyroid, sex and adrenal hormones. There is a section about mood in FM patients.
The last section of the "program" so to speak, is Reduce; reducing "residual fatigue" left after addressing the first 3 steps of Rest, Repair, & Rebalance. I appreciated that Dr. Liptan didn't just end it after the Rebalance section. Because I've seen this, where someone says "if you follow these steps, you can reverse or eliminate your fibromyalgia", which just plainly hasn't been my experience. There was always some residual nerve pain, extreme neuropathy with sleep (even with rest), fatigue, digestive problems, even if I ticked every part of the plan. This is why this book was so encouraging for me. It wasn't an end-all, be-all.
This is where she really dives into any undiscussed supplements and medications that may help things like pain hypersensitivity and fibro fog (medications that can contribute to this too). Dr. Liptan addresses a lot of commonly asked questions about FM. She also addresses opiates (opioids) for FM, and the basis for why many doctors believing they are ineffective, is due to...
"a few small studies showing they were ineffective for fibromyalgia pain....there are no large studies that have examined this issue, so doctors are making decisions without much information" (less than 100 patients were in these studies). "Most of what I have learned about managing fibomyalgia pain is from my extensive experience treating patients..."
I like that Dr Liptan takes the time and the risk of talking about using this option as something for those whom nothing else has worked. She recommends patients try to limit their use of the medication to 1/3 of the time, if possible. If you're wanting a more in-depth look at my opinion on opioids, check out this article I wrote just last week: http://severalspoons.com/reaction-gaga-interview/
She also discusses other stigmatized options, such as THC ad CBD. To wrap up the Reduce section, other co-morbid (commonly occurring) disorders with FM are contemplated further.
I would have liked if there were any suggestions for possibly more emotional and mental coping skills for fibromyalgia. But in reality, the book was meant to be a primarily full-spectrum, exhaustive look into the physiology of FM, and what we can DO to help ourselves, and help our providers help us better. Which Dr. Liptan does an excellent job of.
What I especially appreciated about The Fibro Manual is the emphasis on a full-spectrum approach, including holistic and natural remedies, while also not excluding medication for residual symptoms and effects. The approach is one that is bottom-up, which is different from what I've typically seen in books about FM. Instead of promises claiming to reverse fibromyalgia, Liptan introduces scientific research (some her own research, although not all), to support the advice she gives to readers. Not to mention she is a great writer and knows how to put things simply for anywhere in your fibromyalgia diagnosis.
I bought Dr. Liptan's book right off of Amazon.
Have a good week spoonies :0)
Liptan, G. (2016). The fibromanual: a complete fibromyalgia treatment guide for you and your doctor. New York: Ballantine Books.