Updated: Sep 24, 2022
I wrote this story last week but the beginning was too pedantic and reads like a news article or history book; the ending seemed too extreme, too harsh; so I held off on publishing it. This past week though, one patient after another came to me in my memory, urging me to tell their collective stories. Jacquelyn B. reminded me that I had promised her that I would always listen to the patient with pain. Kristian M. begged me not to forget her struggles in finding someone to help. Carolyn B. said "you said you would stand up for us". I could hear Gail M. wailing "You've gotta help us, doc !!" Nadine N., Kathryn M, Barbara L, Anne E., Arlene A, Eunice C., Gwendolyn S. Kate T. One by one, they came knocking at the door of my conscience. So perhaps I will take some time to tell their stories, the collective stories first, then individual stories later. All of them have led amazing lives before they were brought down by this disease. But first, the background story and my ongoing angst.
Anyone who has practiced medicine or has been involved in women's health in the past 50 years has encountered fibromyalgia in one form or another. Many of us have also watched the pendulum swing from under-recognition to over-diagnosed and back to under-diagnosed again. Likewise, the disease was alternately under-treated, swung to over-treatment, and back again the past few years. Although the course of fibromyalgia mirrors our society's recognition and treatment of pain in general, this particular disorder was also handicapped by its "credibility" and its association with women. Since women were not part of the medical and research establishment until the very recent decades, diseases that affect women exclusively or predominantly have often been ignored, particularly if they don't cause mortality so much as morbidity.
Admittedly, fibromyalgia is not an easy diagnosis to make accurately and had no reliable treatments. It is not progressive, does not cause permanent visible muscle or joint damage, and does not directly cause early death. Until recently, there were no easy blood markers for it like with other rheumatologic diseases, no Xrays or MRI findings. However, the main problem with fibromyalgia was that the vast majority of patients who presents with this syndrome of widespread pain and tender points are women. Thus, it was easier for the arrogant and sexist wing of medicine to relegate fibromyalgia to the "histrionic" or "psychogenic" disorders that predominantly affect women.
Other examples of severe disabling painful conditions that affect women more than men include diseases such as endometriosis, pelvic pain, polymyalgia rheumatica, migraine, scleroderma, trigeminal neuralgia, and a host of autoimmune disorders. Some of these disorders are just now being recognized, researched, and beginning to get treated.
Though the term fibromyalgia was first coined in the 1970s, the disease can be traced back thousands of years to Biblical times. When I was going through medical school and residency training in the 1980s, many of my attending physicians refused to recognize fibromyalgia as a "real" disorder and thus often did not offer any treatment to the patients. To some degree, this was due to our poor understanding of how the nervous system affects the musculoskeletal tissue as well as the lack of medicines FDA approved and indicated for this disorder at the time. But I believe that in the vast majority of cases, the refusal to acknowledge fibromyalgia as a disorder stemmed from the undercurrent of misogyny that permeates medicine even today.
There were others in the medical community who did teach me what this disease was, how to diagnose it, and how to treat it despite our very limited, almost non-existent treatment options at the time.
In the 1990s, when I first started my private practice in the San Fernando Valley, my practical education of fibromyalgia was furthered by the multiple women who presented in my office with this puzzling, intractable disease. Since there were no FDA-approved treatments yet, we would try every and any off-label treatments possible to see if we can get any long-term or even short-term relief of symptoms.
There were the traditional trials of NSAIDs, amitriptyline, trazodone, gabapentin, SSRIs, low dose narcotics, muscle relaxants, warm water physical therapy, trigger points injections, and then the non-traditional treatments like guaifenesin, anti-inflammatory diet, chiropractic, acupuncture, yoga, tai-chi, sauna, infrared therapy, cannabis, low dose naltrexone, and even moving to warm dry climate. Although none of these treatments are highly effective, when they do work, it was a tremendous relief to restore function to these long-suffering patients. Despite this, I would still occasionally learn of suicide attempts by my fibromyalgia patients who have not responded to any of these treatments. These patients and their suicide threats and attempts pushed me and other doctors in the community to treat pain seriously so that it does not become a cause of other pathology such as migraine, depression, anorexia, IBS, overactive bladder, chronic fatigue, etc... emboldening us to use stronger narcotics if necessary to control chronic pain.
As the recognition of fibromyalgia went mainstream with such books as "What your doctor may not tell you about fibromyalgia" in the 2000s, so did the push to control pain more aggressively, with higher dose opiates if necessary. Laws were passed and guidelines were published, urging physicians to treat pain seriously. This coincided with the release of longer-acting narcotics like Oxycontin, Morphine ER, Buprenorphine, and Fentanyl patch. Physicians were taught, in one seminar after the other, that the longer-acting pain medications could control pain throughout the day with less need for pill-popping, which would provide a more stable blood level and thus less euphoria effect as well as being less habit forming, and thus, minimize addiction potential. In the late 2000s, Lyrica was the first medication specifically approved for the treatment of fibromyalgia, then in quick succession, Savella, and Cymbalta.
Fibromyalgia patients benefitted during this decade with the increased recognition and treatment of their nerve disorder and the aggressive approach to pain control. Many of my patients who didn't respond to off-label treatments achieved remissions on the new FDA-approved meds. Some who didn't were eventually stabilized on the higher doses of hydrocodone, oxycodone, oxymorphone, methadone, buprenorphine, morphine, or fentanyl. Some of the more severe cases were able to get off oral meds and restore normal daily function after we implanted subcutaneous pain medication pumps. This option had the added advantage of removing the stigma of taking oral pain medications, and lessening the exposure to verbal abuse by ignorant medical and pharmacy personnel.
Unfortunately, as the restrictions on opiate prescription use in chronic pain started to loosen, we began to get more and more patients who were coming in with severe pain not related to any recognizable chronic pain diagnoses and they would often be misdiagnosed as fibromyalgia.
By the early 2010s, reports of rising death tolls from opiate overdose were trickling in. Ostensibly at first from drug seekers who were abusing the new more aggressive pain control guidelines, and initially it appeared to be associated with the crushing of the long-acting Oxycontin tablets. Then it was recognized that patients on chronic pain meds are also at high risk of accidental overdose from accidental duplication or combination with other sedating medications or agents.
New guidelines came out from the state Medical Boards and the CDC. Then the DEA went on the hunt and started prosecuting pharmacies and pain management doctors and clinics. One pain clinic after another started closing down, and patients who were associated with the targeted clinics were red flagged and sometimes could not find any doctors to help with their pain. Vast numbers of patients became collateral damage for the war against opiates waged in the legal and media institutions.
For chronic pain patients in general, the lack of access to pain meds requires them to make serious adjustments in their lifestyles, like not getting out of bed, not holding a job, and not taking care of their children. For many fibromyalgia patients, it was as if the doors to treatments were slammed shut. And for some, there was only one other way out. One of my fibromyalgia patients told me she could not bear to attend her online fibromyalgia support group anymore because 5 of its numbers have already committed suicide in the past years.
The latest betrayal for these patients came not from the legal and media institutions but from the medical and academic community itself. I was horrified and shocked at my last pain management seminar when the young professor lecturing on the topic of fibromyalgia stated aloud the official current policy of the medical community that there is no role for chronic opiate use in fibromyalgia. When asked what we should do for patients who have failed all the recommended treatments, FDA-approved and otherwise, he could only recommend yoga.
That was when I realized that misogyny was back in style. That the medical community has been cowed by the "opiate hunters" into toeing the line, into spouting what is essentially a ludicrous theory. The idea that we should not use pain medicines in the treatment of what is defined as a chronic pain disease.
This is not part of my healer's oath. My Hippocrates Oath promises to act in the best interest of the patient, to preserve health as well as to treat diseases. And to think that this is being taught in all the medical schools all over the country. That the next generation of physicians will actually think that it's okay to leave people in chronic unbearable pain day after day when there are good medicines available that, when used judiciously, may be able to restore life and function to an incapacitated patient. Obviously, there are serious side effects, just as there are for any powerful medication. But that is what we are trained to do, to take into account these known serious side effects in the settings of each individual patient, to evaluate the risks versus benefits of each treatment offered, to prevent, to monitor for, and to ameliorate each possible side effects whenever we can.
Now, if only we can get through to the other less misogynistic side of the medical community. The ones with enough courage to speak truth to power. There are some of them in medical schools and ivory towers everywhere, who can recognize injustice and who will speak common sense to our future doctors.