The two enemies of human happiness are pain and boredom - Arthur Schopenhauer
Amy Berkowitz's chronic pain began in her shoulder. Then, she experienced the same dull ache all over. At 23 years old, she eventually came to feel overwhelmed by these full-body pangs. "Every morning I wake up feeling like I was run over by a truck," Berkowitz writes in her new book, Tender Points. "I feel like I've been hit by a bus. I wake up feeling like I got whiplash. I wake up feeling like I slept on the floor."
Named after the 18 points that people suffering from fibromyalgia find painful when pressed—"two at the bottom of the neck just above the collarbone, two just below the center of each collarbone, one on the crease inside each elbow, two more on the inside of each knee, on the back of the body, two at the bottom of the neck, one above each shoulder blade and just inside each shoulder blade, two on either side of the lower spine, two more on the outer part of each hamstring"—her book details with lyrical precision what it's like to live with the chronic pain that characterizes the disease, and what it's like when no one believes you're hurting.
Affecting between two to four percent of the population, fibromyalgia is the label that encompasses ongoing bodily pain, fatigue, non-restful sleep, and brain fog. Women are diagnosed with the condition seven times more than men. The disease was first identified in the 1990s as a catchall for patients who reported experiencing life-disrupting discomfort but who seemingly had "nothing wrong with them," pathobiologically speaking. To be diagnosed, a patient must exhibit pain in 11 of the 18 tender points when pressure is applied. Until recently, however, women with this pain of no objective origin have often been told that it is all in their heads. Only a few years ago, the New York Times ran piece on the condition with the headline, "Drug Approved. Is Disease Real?" and quoted papers that questioned the legitimacy of fibromyalgia as a medically recognizable illness.
Fibromyalgia, as a diagnosis, is indeed complicated, but those who suffer from widespread pain certainly aren't just imagining it. Patients diagnosed with the condition experience it in varied ways. Some live with manageable pain and are able to go about their days normally, using different therapeutic techniques. Others have had to stop working, cut back on activity, or have lost mobility completely. With such a vast range of cases, it's clear that fibromyalgia is not a specifically defined illness—but the diagnostic label has anecdotally helped the comparatively large population of women who have been historically met with skepticism for their very real pain. In her sociological study of the condition, Kristen K. Barker conducted multiple interviews with women who have fibromyalgia and found that the ultimate usefulness of the diagnosis is "giving medical representation to an individual's subjective distress."
A woman's lived experience is so often denied. Berkowitz experienced this firsthand when she went to the doctor's office for her mysterious shoulder pain. "The doctor was very dismissive and rude to me," Berkowitz recalls over the phone. "It was the first time I felt like I had to stand up to a medical professional and tell her to stop speaking to me that way."
After leaving the doctor's office in tears, Berkowitz went home, her mind reeling from the experience. In bed, she remembered an event that she had repressed for ten years. "As I was lying in bed, before I went to sleep that night, I recalled being raped by my pediatrician when I was about ten. The next morning I woke up and I had pain all over my body." She then sought out a different medical professional and was diagnosed with fibromyalgia, which, she admits, happened quicker than it does for most.
In her book, Berkowitz links her pain to her rape. She believes that her bodily discomfort stems from its traumatic memory. "I very much believe that memories or trauma in your brain affect biological processes," she says—and she's not wrong. While doctors insist that fibromyalgia has no conclusive origin in the body, many studies correlate the condition with traumas like PTSD and rape in adolescence.
This, in part, could explain the higher incidence of fibromyalgia diagnoses in women compared to men; "women [are] more likely than men to develop a chronic pain syndrome after experiencing trauma similar to that experienced by men," Diane E. Hoffmann and Anita J. Tarzian write in their analysis of the gender bias in the treatment of pain, "The Girl Who Cried Pain." Or, in other words, women are more likely to experience somatic pain—like that which characterizes fibromyalgia—as the result of traumatic events. A recent study found that, compared to 28 percent of healthy women, 51 percent of women with fibromyalgia reported they had experienced "very negative childhood or adolescence life events."
On her blog, Giulianna Rigali writes about how she was raped by a stranger while she was out walking as a teenager. Eight years later, she writes, she was raped again. In 1997, she started experiencing pains in her wrists and shoulders. "However, after the birth of my 4th child, in 2001, the pain spread throughout my body," she tells me over email. "I could not get out of bed without being crippled up in pain. I could barely walk or form sentences." She also suffered from PTSD in the form of sleeplessness and fatigue. In 2001, she was diagnosed with fibromyalgia. Now a 49-year-old mother, she is currently working with her doctor to manage her condition. "Knowing the diagnosis was the first step in recovering my life," she says.
Though as fibromyalgia has gained more visibility throughout the years, men, too, have started to seek out the diagnosis for their unexplained pain. Norman Hanley, who was diagnosed with fibromyalgia in 2013, moderates the Facebook page Fibro for Men. "Around 2009 I stopped being able to get a good night's sleep, but I thought that was just part of getting older in life. I told myself to just man up," Hanley tells me over the phone. "But I started to see my performance at work go down—I was in traveling sales, but soon I was just too tired to keep up. Eventually I had to quit and try to find something that didn't require too much travel."
Six months later, at a new job, Hanley's condition only worsened. A Marine veteran, he went to the VA, and the first doctor he saw told him that he had nothing wrong with him—it was all in his head. After doing some more research on his own he went back to the doctors and asked about fibromyalgia. "My doctor said, 'Well, you might have that, but really, fibromyalgia is a woman's disease," Hanley recalls. Following that visit, he bounced around from doctor to doctor for a year and finally received a diagnosis of fibromyalgia from a chronic pain clinic.
The website that Hanley also moderates, Men With Fibromyalgia, highlights similar stories from men who suffer from overwhelming pain with no biological marker. The site's purpose, as its name would suggest, is to raise awareness for men with the condition; so far, it seems to be working. This year, the CDC acknowledged that one in seven men suffer from fibromyalgia—up from one in eight in 2014. "Talking with other men in support groups, I've seen that a lot of doctors believe that fibromyalgia is strictly a woman's disease, or, even worse, [that] it's not real at all," Hanley says.
Nortin M. Hadler, a professor of rheumatology at the University of North Carolina at Chapel Hill, explains the complicated nature of diagnosing a patient with fibromyalgia, which he calls a "socially constructed disease." "This is a very difficult subject to talk about," he says, "largely because its an issue in semiotics—what do we mean by the word fibromyalgia? What do we mean by the word disease? One of the sadnesses of this topic is that it tends to devolve into blaming the victim. If you feel awful and people react with disbelief, that's infuriating."
"But there are no bad people here," he continues. "There's a need to better understand the experience of illness for a large number of adults—and some children—who just feel awful."
Or as Berkowitz writes of her experience with pain and fibromyalgia in Tender Points, "While I do believe the diagnosis is useful—at least in the limited sense that there is value in giving a name to something with no name and thereby giving it legitimacy—it's only a starting point."
Source: Gabby Bess, Female Pain: Living with an Illness That No One Believes In, Vice, September 15, 2015.
It has become trendy lately to “explain” fibromyalgia with central sensitization, or to claim that central sensitization is the primary mechanism. CS clearly occurs in fibromyalgia, but it doesn’t explain it, any more than arterial plaques “explain” heart disease.
The lack of inflammation or structural abnormality in muscles or joints – aside from making diagnosis difficult – is the main reason there are no widely accepted or effective treatments.
Although her recent announcement did not explicitly mention the cause of the severe pain, last September, while promoting her Netflix film Five Foot Two during the 2017 Toronto International Film Festival, Gaga revealed her struggles with chronic pain from fibromyalgia...
With its generalized symptoms of pain, fatigue and digestive issues, fibromyalgia can often hide as something else for many years. Worse, some professionals doubt the existence of this condition, which can also cause chest pains, brain fog and depression. Here, six men and women speak about living with fibromyalgia.
Skepticism around fibromyalgia stemmed in part from an elusive organic explanation. Symptoms appeared to arise out of nowhere, which didn't make any sense to empirically minded physicians.
Fibromyalgia is a chronic ailment without a known cause and without a safe, effective conventional medical treatment. However, the three to six million Americans who suffer with fibromyalgia will be pleased to know that several studies published in leading medical journals have found outstanding results from homeopathic treatment.
Fibromyalgia has come a long way from being an “it’s all in your head” disorder to being a disease with a better defined biochemical mechanism. There's hope now more than ever.
Fibromyalgia is a common, little-understood condition that is seven times more likely to affect women than men.
For patients with chronic diseases masked by a healthy-looking exterior, diagnoses can be elusive, or unhelpful.
Two of the disorders listed are endocrine, two involve structural damage to the nerves, and several are neurological. Dr. Martinez-Lavin warns that if you are due to have surgery to decompress a compressed nerve, as in carpal tunnel syndrome or back pain, make sure that you actually have a compressed nerve and are not simply in pain from Fibromyalgia.
For women with fibromyalgia, their pain is very real—even though many doctors believe the disease isn't.
Initially, Being Fibro Mom was a way to connect with other parents/caregivers living with fibromyalgia, and share my experiences as I work through it all. I’ve shared everything from my many failures to embarrassments to successes as well as entries from My Fibro Journal. I’ve met some pretty amazing fibro parents along the way (join our closed Fibro Parenting group), and unintentionally became a voice and advocate of the fibromyalgia community along with many others. It’s been an incredible journey!
A day in the life of a mom living with fibromyalgia and lyme disease.
I made the decision to learn more about fibromyalgia. I read everything I could find including websites, books, and research studies. It was overwhelming to deal with so much information. I started this blog as a way to sift through and make sense of it all.
FibroMappTM Pain Manager+ is an award winning comprehensive 12-in-1 chronic pain management app that is helping people gain more understanding and control over their condition.
If we think of fibromyalgia, or as we should rethink fibromyalgia, we have to look at fibromyalgia as a newer problem, not necessarily as a disease, but we will call it a syndrome
"This film is an important milestone for the fibromyalgia community, and a must-see for anyone who is living with or knows someone with fibromyalgia."
Supporting MEN in this fight because it matters!
The American Fibromyalgia Syndrome Association''s (AFSA) primary mission is to fund superior quality, scientific studies on fibromyalgia syndrome (FMS), which is an extremely painful, fatiguing, and often debilitating medical condition. Studies show that FMS affects 3-5% of the general population.
A life with a variety of passions and a few miracles, too
A blog about chronic illness and chronic pain life.
Life with a chronic illness.
If you're a sick chick in search of like-minded folks''the kind of people who are living well in spite of illness''you're in the right place!
The name "Co-Cure" stands for
"Co-operate and Communicate for a Cure." The mailing list has been established with the goal of furthering co-operative efforts towards finding the cure for the illness(es) commonly referred to as Chronic Fatigue Syndrome (CFS) and Fibromyalgia (FM).
Julie Ryan was diagnosed with fibromyalgia in 2010 and endometriosis in 2012. She's lived with chronic migraine since the early 2000's (and migraine her entire life). In 2019 she was diagnosed with intercranial hypertension.
Julie has a degree in Psychology, and works as a freelance writer and marketer. Freelance work allows her to work when she can and not be tied to a desk or a schedule. Julie believes in living an inspired life despite chronic illness.
This is the official support group for Dr. St. Amand's protocol, using guaifenesin to reverse Fibromyalgia.
Living creatively with chronic illness.
Fibro 360, brought to you by Fibromyalgia & Fatigue Centers (FFC), is a community of hope & understanding for people affected by fibromyalgia & chronic fatigue.
Your source for information and education about chronic widespread pain.
Fighting for freedom from fibromyalgia.
FCI''s mission is to give hope to everyone suffering with Fibromyalgia and Chronic Fatigue Syndrome through extensive research and reporting of natural, proven and effective therapies that focus on the root causes.
Documenting an invisible disease.
Our mission is simple: we aim to educate and assist patients with ad-free, patient-focused information that they can put to use today. We strive to make each issue of the Fibromyalgia Network Journal as accurate as possible, basing articles on published scientific findings, with many of them reviewed and edited by the experts for accuracy.
Are you thinking, "What's so different about this website?" Why Stop Here? If you wish to lower your dependence on prescription and over-the-counter drugs, through natural means (with your doctor's approval), FibromyalgiaHope.com has specific stategies for your particular situation.
Top resource site for Chronic Fatigue, Fibromyalgia and IC disease.
Allow yourself to share your experience with this invisible illness and help yourself and others too. Share your tools, how you deal with everyday life, and gain access to information on Chronic Fatigue and Immune Dysfunction Syndrome and Fibromyalgia (CFIDS/FMS). My mission is to empower patients to take control of their health by providing my own story and experience with treatment information, quality health products, community, and advocacy.
Please understand that everyone is different in their journey with fibromyalgia and/or chronic illness. This is my journey, my stories, my vulnerability to share with you in order to help in some way.
invisible illness… visible me. living with fibromyalgia, depression and ADD.
Find out how to get involved with improving quality of life for yourself and others.
The National Fibromyalgia Association is a 501(c) 3 nonprofit organization whose mission is to develop and execute programs dedicated to improving the quality of life for people with fibromyalgia.
People with fibromyalgia no longer have to be alone! The National Fibromyalgia Partnership offers current, medically-accurate information on the symptoms, diagnosis, treatment, and research of fibromyalgia.
Hi there! I am a health writer, health advocate and all-around health nerd. Six years ago I was diagnosed with a chronic pain condition. On my health journey, I've learned the power of self-care skills to improve my health and well-being. As an ePatient Blogger I am excited to educate and inspire others to be skillfully well,
The Solve ME/CFS Initiative (SMCI) has been the leading organization focused on myalgic encephalomyelitis (ME), commonly referred to as chronic fatigue syndrome (CFS), since being founded in 1987.
Fibromyalgia is a chronic syndrome marked by muscle, joint, and bone pain, plus fatigue. Join the fibromyalgia support group and chat with others battling fibromyalgia.
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A community of patients, family members and friends dedicated to dealing with Fibromyalgia, together.
Fibromyalgia is a chronic condition causing pain, stiffness, and tenderness of the muscles, tendons, and joints. Fibromyalgia is also characterized by restless sleep, awakening feeling tired, fatigue, anxiety, depression, and disturbances in bowel function.
Fibromyalgia makes you feel tired and causes muscle pain and "tender points." Tender points are places on the neck, shoulders, back, hips, arms or legs that hurt when touched. People with fibromyalgia may have other symptoms, such as trouble sleeping, morning stiffness, headaches, and problems with thinking and memory, sometimes called "fibro fog."
Although fibromyalgia is often considered an arthritis-related condition, it is not truly a form of arthritis (a disease of the joints) because it does not cause inflammation or damage to the joints, muscles, or other tissues. Like arthritis, however, fibromyalgia can cause significant pain and fatigue, and it can interfere with a person's ability to carry on daily activities. Also like arthritis, fibromyalgia is considered a rheumatic condition.
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