My new book, Healing Fibromyalgia, was published last week and I’ll venture that sales are soaring into the high single digits. The e-book is available here and a pre-publication discount is available on the paperback.
The total number of fibromyalgia patients worldwide is jaw-dropping and the situation is much worsened by the medical profession’s failure to adequately diagnose and sympathetically treat this virtual epidemic, displaying a medical sexism that’s hard to miss even if you’re not looking closely. The sexism I see is the result of a male-dominated healthcare system dealing with a condition that simply doesn’t follow the rules we learned in medical school.
And because fibromyalgia doesn’t follow the rules, its victims–virtually all women–get second-rate treatment from physicians. You’ll note I’ll always use the feminine pronoun in this article (as I did in the book) because of fibro’s profound gender inequality: 95% of people who have it are female, ranging in age from 8 to 80.
Fibromyalgia gets its start in a biochemically susceptible woman after a lengthy period of stress. Making matters much worse is that even after the initial stressors recede, her fibro pain persists. This occurs because of the stress of the pain itself combined with an unhelpful, unsympathetic, and sometimes overtly hostile medical profession.
Next year WholeHealth Chicago will celebrate its 17th anniversary, and I mention this because I began seeing fibromyalgia patients from the very start of our clinic’s opening. Conservatively, I estimate I’ve diagnosed and treated more than 1,600 people with fibro. Fewer than 50 of these patients were men.
The women who came to our clinic in the early days were seeking something other than what they’d been hearing from their own physicians. In fact, a steady stream of our patients came to us by way of Northwestern Memorial Hospital’s Rheumatology Department, which for years told women (and taught generations of mis-educated Chicago rheumatologists) that there was “no such thing as fibromyalgia” before referring them to psychiatrists. Back in the mid-90s, many women first heard of fibromyalgia from their chiropractors or massage therapists, but then articles began to appear in popular magazines. These patients came to WholeHealth Chicago when they learned that our center combined conventional medicine with the then-new “alternative medicine,” rightly thinking that if mainstream medicine alone had nothing to offer then perhaps we did.
Seventeen years later, the situation has guardedly improved. Now we have three FDA-approved medications for fibromyalgia, documented effectiveness of alternative therapies (including supplements, herbs, chiropractic, and acupuncture), numerous articles in medical journals, fibro websites, and support groups. But still, after all these years, a majority of doctors (75%) feel uncomfortable making a diagnosis or initiating treatment.
Here’s why: Typically, when you arrive in your doctor’s office with a symptom (headache, tummy ache, weight loss, anything) he or she is trained to look for disease as the basis for your symptom. To hunt for disease, tests are ordered (blood tests, x-rays, and so forth). If everything comes back negative, your doctor can say “everything’s fine, your tests are normal,” and by ruling out the possibility of a disease being present he earnestly feel he’s done a good job.
The real flaw here is the doctor’s reluctance to make a firm commitment about your diagnosis without the confirmation of positive test results. Not feeling confident in making a diagnosis means he’s equally reluctant to initiate any effective treatment. With nothing “positive,” consciously or unconsciously doctors too often categorize the fibromyalgia patient as “another tired and complaining woman” and move on. Or the patient is sent to a psychiatrist or to a rheumatologist. Woe betide if you dare ask for a pain pill. In this case you’ll be categorized as “demonstrates drug-seeking behavior.”
Even though the pain is very real, fibromyalgia is not a disease. Your blood count is normal, tests for inflammation or an autoimmune disorder are negative. Even a muscle biopsy taken from an especially painful area will show normal muscle tissue, and thus fibro flies under the radar of diagnostic testing.
Instead, this non-disease fibromyalgia is diagnosed with two rarely used tools: taking a very detailed medical and personal history from the patient herself and performing a brief, hands-on, fibromyalgia-specific physical exam that tests for tender points.
Most doctors readily admit regret at not having enough time to listen to your biography–the story of your whole life–important as it may be to understanding how your fibro developed. And based on my own experience educating doctors on fibromyalgia, fewer than 10% actually know how to perform the tender-point physical exam. In fact, acknowledging that most doctors are inept at this test (which simply requires locating and compressing clearly identified and potentially tender areas with 10 pounds of fingertip pressure), the American College of Rheumatology eliminated it as part of fibro diagnosis. Done correctly, tender point testing does remain a valuable diagnostic tool.
More recently, I was involved with a huge online survey called WE FEEL (Women Expressing Fibromyalgia’s Effect on their Everyday Lives) that served as a catalyst to my finishing Healing Fibromyalgia.
Here are a few realities the fibro survey uncovered:
- Somewhere around 12 million American women suffer the daily pain of fibromyalgia, more women than are diagnosed with diabetes. This means possibly 8% of women in the US alone have fibro. When doctors tell me “we don’t see any fibro in our practice” I ask myself “Do they just not want to deal with fibro?” Worldwide fibro estimates are in the range of 200 million women.
- Of the 12 million US women with fibro, approximately 75% are unaware of their diagnosis, although I’d place the number closer to 90%. This is because many women with early or mild fibromyalgia think their widespread aching is just part of the aging process and don’t mention it to anyone. They’ve accepted “we can’t find anything wrong” and simply live with it.
- Statistically, a typical woman with fibromyalgia sees five physicians before she is properly diagnosed, all that time her pain growing steadily worse. Many give up at the second or third physician and suffer alone for years, often postponing medical help until their pain becomes unbearable (and more difficult to treat). Patients describe the “cold look” they get from doctors when they say, “I’ve been to other doctors and no one can find anything wrong with me.” From first perception of muscle aching (usually in neck and upper back) to actual diagnosis of fibromyalgia can be upward of five to 10 years (years!). No condition in all of medicine takes 5 to 10 years to diagnose except fibromyalgia.
- Women in the survey regularly reported not being taken seriously by their health care providers, by their families, or by their employers. Fibro pain affected all aspects of their lives: ability to work at a paying job and/or at home, to think clearly, to enjoy relationships. Most women kept their pain and fatigue to themselves, tired of hearing “But you don’t look sick” from everyone around them.
- And then there’s the treatment component: even after fibromyalgia is finally diagnosed and the doctor acknowledges a woman’s pain, chances are he simply will not prescribe adequate pain relief. Studies have repeatedly shown that when patients of both sexes experiencing equal pain seek help from a physician, the man virtually always receives better pain control than the woman. Men are prescribed pain meds, women get antidepressants. Women, being more articulate about their pain, are categorized as “whiners.” When a usually silent and stoic guy says he’s in pain, his (male) physician thinks “this is real” and prescribes accordingly.
For the past two years I’ve been giving talks on fibromyalgia to medical groups and I’m not happy with what I’ve found. I still actually hear doctors say, “There’s no such thing as fibro” and “Fibromyalgia is a woman’s way of having her husband do the housework.” The pharmaceutical reps for the three FDA-approved fibro drugs have told me they were unprepared for the degree of physician resistance (from both male and female physicians) and occasional outright hostility to the diagnosis of fibromyalgia and its treatment.
But we do have a pretty good idea why women get fibromyalgia
Fibromyalgia is not a disease and will never lead to something else, like arthritis. The word “fibromyalgia” will never appear on anyone’s death certificate. But it can surely derail your life.
At the very heart of fibromyalgia is the stress-buffering neurotransmitter serotonin. Already lower in women than men, among fibro women it’s low enough so they go through life feeling like open wounds in a salt shaker world. When stress exceeds stress buffer, the muscles of a woman with fibro tighten up painfully in a fight-or-flight response and remain that way (more on this below).
To make matters worse, the nerve endings surrounding these muscles release excessive amounts of chemicals called pain modulators, which cause people with fibro to actually feel more discomfort/pain from any unpleasant stimulus (like being pinched) than other people. Plus, it lasts longer.
In medical terms, fibromyalgia is a syndrome of pain amplification and pain persistence. It’s a genetic susceptibility, and family members of a woman with fibro are more likely to have other low-serotonin disorders, including depression, anxiety, alcoholism, migraines, TMJ, irritable bowel, and chronic fatigue syndrome.
In other words, if your dad was alcoholic, your mom depressed, and you’re currently stressed out in an abusive relationship, fibromyalgia is in your cards unless you take some action now and deal yourself a new hand.
The three medications for fibro, which are far from perfect because of side effects, do address these essential fibro irregularities. Savella and Cymbalta raise levels of serotonin and norepinephrine, a second pain-reducing neurotransmitter. Lyrica reduces the release of pain transmitters from irritated nerve endings.
Many women can use the Six-Week Nearly Natural Cure presented in Healing Fibromyalgia to heal their fibro without drugs or doctors. It features supplements (which closely mimic the action of fibro prescription drugs, but without the side effects), self-care, and a range of healing therapy recommendations. And you’ve got to de-stress.
Why muscles are affected by stress that is central to fibro
Keep in mind that the stress-induced fight-or-flight response is designed to spur you to action in the face of extreme emergency, like fleeing a mugger or lifting a car off your child. You need muscles to do both.
For a biographical clue to the importance of muscles in fibro we need to explore a statistic that doctors are very uncomfortable addressing. Three separate surveys among fibromyalgia patients have shown that 25% of people with fibro were victims of physical, psychological, or sexual abuse as children or victims of sexual assault at any age.
If you can imagine the body posture of an eight-year-old girl as she hears the front door open and the footsteps of her rage-aholic father, you’ll get an understanding of how fibro is connected to the term “muscle memory,” which I devote an entire chapter to in my book. Decades later, father long dead, she encounters a highly stressful situation and her muscles remember what to do, seizing up under stress. That’s fibromyalgia.
Just three more points…
Because I was so miffed about the attitude of physicians toward fibromyalgia–especially with three quarters of them admitting not feeling comfortable either diagnosing or treating it–the last chapter of Healing Fibromyalgia is a gift to you that makes working with any doctor easier: it’s called the Physician’s Guide to Treating Fibromyalgia. Rather than shred your copy of the book to tear out this last chapter, we’re making it available on our website as a pdf file you can print and give to your doctor.
The chapter isn’t long (doctors prefer that) and it’s presented in a cookbook style (they like that, too) that lays out our protocols for treating fibro. If your doctor tosses the few pages back to you and says “Don’t bother me with that internet stuff,” find another doctor. These days it’s a buyer’s market, and the new book also provides internet resources helpful in finding a fibro-sensitive, fibro-educated physician.
Second, the fact that an estimated 200 million women around the world likely have fibromyalgia should stop you in your tracks. Probably in many cultures a woman suffering relentless widespread muscle pain is ignored, widespread pain being her lot in life–a bad incarnation or punishment for something she “deserves.” Consider, too, what I’ve already reported about US physicians ignoring US women with fibro. It’s not just women in some far-off land who have been suffering.
If fibromyalgia is essentially stress transformed into pain, there’s something seriously wrong with a planet on which a good percentage of half the occupants are under so much stress that their muscles lock up in pain. While writing Healing Fibromyalgia, I wanted to somehow measure, to grasp the degree of this stress. One day, in a single 24-hour period, I went through newspapers and read online and collected everything I could find relating to violence against women. I was not selective: African clitorectomies, Indian bride burning, and wage inequality at Wal-Mart were all included.
This experience, and I what found, is related in detail in the second-to-last chapter (penultimate to you English majors), entitled Women Under Siege, and that title alone gives you a pretty clear sense of my larger view of fibromyalgia.
Finally, if you can’t imagine there’s anything positive about fibro, here’s something: patients with fibromyalgia actually start feeling better almost immediately after gaining a thorough understanding of their condition, how it came about, and how they can get better. Acquisition of knowledge alone–no meds, no treatment, just “getting it,” understanding the why–will help your fibromyalgia.
And that’s what I intended with the book. By the time you finish reading it you’ll know more about fibro than 99% of practicing physicians.
Although I’d never classify Healing Fibromyalgia as a stocking stuffer to rival a turquoise Tiffany box, if you know someone with fibro or anyone concerned with women’s issues, the book, if I say so myself, makes a pretty good gift.
David Edelberg, MD