I’d like to apologize to all the patients I saw in my years working in urgent care who had chronic pain due to fibromyalgia or autoimmune disease.
I’d like to apologize for not knowing, understanding, and in some cases not even believing what you were going through.
You see, in physician assistant school, much like medical school, they don’t teach us about how these diseases impact our patients’ lives. They don’t tell us that it’s been incredibly exhausting for our patient to get to the office or that they will likely have to rest and recuperate for days after.
They don’t tell us that sitting in the chair in the waiting room hurt every part of your body that made contact with the chair, or your clothes, or your shoes. They don’t teach us about how your family is impacted by your inability to participate in things, give care and attention to spouses or kids, or even make dinner.
I know because I’ve been battling with fibro and some other yet-to-be identified autoimmune issue for a few years now. I know because I’ve had to teach my young son how to hug gently. I know because I’ve heard his friends comment on how much time I spend in bed.
I know because I can no longer physically keep up with seeing patients in an office (thankfully, I’ve been able to work from home in the emerging field of telemedicine). And I know because that good old “fibro fog” often makes it sound like my phone is cutting out as I struggle to remember the words I wanted to say to the patient I’m trying to help.
In the beginning, I wanted to hide my diagnosis from my colleagues. There were still so many providers out there who didn’t even believe fibro was a real disorder (I used to be one of them). But over the last two years of non-stop referrals to specialists, tests with quirky but no clear answers, trials of one medication after the other, I’ve learned that even though the medical community is opening to the reality that this is real, “they” still don’t get it.
This hit me again two days ago as I sat in an appointment with a rheumatologist who said, “I don’t see anything of concern” four times during our visit. Really? You don’t think that having to do my job from my bed some days is concerning? You don’t think the isolation caused by not being able to go and do and see things with my family is concerning?
It’s past time for providers to stop looking at lab results and start looking at the entire picture. Even if providers don’t have a cure, just a simple acknowledgement of what patients are actually going through would be a huge step towards bridging the divide between your reality and mine.
Fibromyalgia is a neurological disorder that affects approximately 12 million people in the U.S. This chronic disorder causes aches and pains in the body that are severe enough to impact normal activity and disrupt sleep. A person with fibromyalgia may feel pain in the muscles, tissues, joints, and tendons in different areas of the body. Along with these physical symptoms, people suffering from fibromyalgia also experience mental issues as a result of fibromyalgia, including depression and anxiety. Fibromyalgia can also cause deep fatigue and exhaustion, even with very little activity. Even with so many people suffering from fibromyalgia, it remains a difficult disorder to diagnose. One of the most valuable tools for diagnosis was defining fibromyalgia tender points.
Fibromyalgia is a term that has only been used in the last few decades to describe a condition of widespread pain throughout the body that also includes fatigue, poor sleep quality, and mood issues. It is possible, however, that mentions of a fibromyalgia diagnosis date all the way back to the 1600s.
Fibromyalgia has had many names throughout the years including:
Since physicians could not find any evidence of inflammation, these names were replaced with fibromyalgia in 1976. This translates from its Greek roots into “pain in the muscles and tissue.” While a fibromyalgia diagnosis is still difficult to establish today, there have been many recent advances. Research has led to promising tools and guidelines to help pain doctors and patients alike. One of the earliest was the fibromyalgia tender points scale.
Fibromyalgia affects about 4% of the U.S. population (~ ten million people) and is predominately found in women.
Fibromyalgia is not a condition of exclusion, but its symptoms are common in many other illnesses. To make things more complicated, fibro symptoms can appear on their own or in tandem with another disorder. Identifying the cause of each can be problematic. This situation is exacerbated since fibro is a waxing and waning condition, making patterns more difficult to recognize even with thorough tracking.
Although researchers agree that there is a neurological component to the disease, many previously believed that it was all in a person’s head. Some studies have pointed to risk factors such as a genetic predisposition to feeling pain more intensely. Other evidence connects the development of fibromyalgia to a stressful or traumatic event, repetitive injury, or other disease. Sometimes fibromyalgia has no clear cause or trigger and develops on its own.
Women are three times more likely to develop fibromyalgia as men, and people with certain illnesses already present may have an increased risk. Autoimmune disorders such as lupus and rheumatoid or spinal arthritis sufferers develop fibromyalgia at a higher rate than those without these conditions.
There is no simple, scientifically-supported test to identify if someone has fibromyalgia. According to the NationalFibromyalgia Association, it takes the average person five years to be diagnosed with fibro and this is generally after extensive other treatments have occurred. Misdiagnosis can still occur, but there are far more developed and data backed approaches that physicians use today.
In 1981, the first clinical study was published that confirmed that symptoms and tender points of fibromyalgia could be found in the body. This study also established the first data-driven criteria for this condition.
In 1990, the American College of Rheumatology (ACR) created the first set of guidelines to help diagnose fibromyalgia. These guidelines set forth the following formal criteria for a fibromyalgia diagnosis in a research context:
The patient must have a history of widespread pain lasting more than three months
This pain must affect both sides of the body and be present above and below the waist
Of the 18 tender points designated on the human body, at least 11 of them must be in pain
Before these guidelines were released, a fibromyalgia diagnosis was completely subjective and many were skeptical that the disorder even existed. Even with these new guidelines, fibromyalgia is a condition that can come and go, so using the fibromyalgia tender points criteria can be misleading or change from day-to-day.
Although most of the population has a spot or two on their body that may be more sensitive than others, people with fibromyalgia often experience excruciating tenderness in very specific locations that are spread across their body. Tenderness is generally mirrored on both sides of the body and is located at nine specific places on the body.
The nine fibromyalgia tender points locations are as follows:
Low cervical region: Front neck area just below the chin near the C5-C7 vertebrae
Second rib: Front chest area below the collarbone about 2 inches from the shoulder joint
Occiput: Back of the neck at the base of the skull
Trapezius muscle: Back shoulder area where this large muscle drapes over the top of the shoulder
Knee: Knee area on the inside where the fat pad sits
These nine areas are also sometimes called fibromyalgia tender spots. Because fibromyalgia cannot be diagnosed with a lab test, counting fibromyalgia tender points and taking a detailed patient history were often the best ways to get a clear diagnosis. Scroll to the infographic at the end of this post to see these.
To build on the fibromyalgia tender points scale, the Symptom Intensity Scale was developed using survey results from nearly 12,800 patients with osteoarthritis, rheumatoid arthritis, or fibromyalgia. These patients located pain in 38 anatomic areas of their body and then also completed a fatigue visual analogue scale. The fatigue analog scale requires a patient to mark their level of fatigue on a ten-centimeter line on the day they identified their pain symptoms.
In 2006, Frederick Wolfe and Johannes J. Rasker completed an evaluation of 25,417 patients using the Symptom Intensity Scale and found that it was the best and clearest diagnostic tool for fibromyalgia. They also found that higher Scale scores indicated increases in hospitalization, disability, serious medical issues, and death.
Because of this relationship, the Scale can be used to measure overall health and also predict outcomes for patients with a number of diseases. It uncovers “hidden” illness that accompanies the presenting illness, such as depression or anxiety in a patient with rheumatoid arthritis.
While the fibromyalgia tender points are still helpful, they’re not the only path to diagnosis for medical professionals. In 2010, the American College of Rheumatology published another set of criteria for fibromyalgia. It eliminated the fibromyalgia tender points count and replaced it with the widespread pain index (WPI) and symptom severity scale (SS).
The WPI calculates if a person has experienced pain in the last two weeks in 19 separate general body areas. Each body area is assigned a one if there is pain or a zero if there is no pain and these are added together to reach a score between 0 and 19.
The SS measures the severity of the person’s fatigue, sleep quality, cognitive symptoms, and somatic symptoms. Each of these four categories is given a score of 0 – 3 and added together for a total possible score of 12.
Using these new scales, the ACR changed the diagnosis guidelines to:
WPI ≥ 7 and SS ≥ 5 OR WPI 3–6 and SS ≥ 9
Symptoms have been persistent for at least three months
There is no other disorder that could explain the pain
Physicians must rely on a patient’s communicated symptoms to make a fibromyalgia diagnosis. Therefore, the first thing a doctor will do is conduct a thorough physical examination of the muscles and joints. After doing this, she or he will then discuss any symptoms a patient is currently having.
Pain: Constant full body pain with pain at the fibromyalgia tender points
Unrefreshing sleep: Even after an uninterrupted eight hours
Fatigue: Chronic fatigue or exhaustion after strenuous activity
Memory loss: Short-term memory problems coupled with bouts of confusion and inability to concentrate
Increased pain sensitivity: Hyperalgesia or allodynia
Depression
Fibromyalgia often is present with other health issues, so a doctor will likely ask about other conditions such as irritable bowel syndrome, headaches, restless leg syndrome, frequent urination, and anxiety.
Since fibro can occur with other illnesses, the next step is to start eliminating more serious medical conditions that could be causing your symptoms. The doctor will run tests on your blood, thyroid, and vitamin D levels. Other tests that could be required are X-rays, computed tomography (CT), and magnetic resonance imaging (MRI). Finally, a biopsy and a physiological exam could be necessary to rule out any suspected mental health issues.
Since fibromyalgia is mainly based off the symptoms that patients share, there are some smart things you can do if you believe you are suffering from fibromyalgia. These tips could save you time, money, and lots of frustration. And, they can help get you back on the path to being healthy and happy faster.
Make sure to communicate any mental or physical trauma that has occurred to you. A major event like this is sometimes associated with the development of fibro symptoms.
Keep a pain diary that includes the location of your pain, how it feels, severity, and the length of time it lasts. This can be a perfect tool to parse out fibro from other health issues.
Choose the right doctor. The stigma around fibromyalgia is fading as more research comes out, but some physicians will be reluctant to diagnose it. Make sure you go to a doctor who is specialized in pain management and has the experience to help you find the right diagnosis.
Treatment of fibromyalgia is best approached as a team, with doctors, physical therapists, and other alternative practitioners working together to treat the physical and mental symptoms.
Dietary changes to eliminate anything that causes inflammation or triggers a pain response (e.g., sugar and red meat)
Changes to exercise plans, including exercises for days when pain is present, and exercise that includes meditation
Prescription medicines as needed
Sleep counseling to develop proper sleep habits to combat fatigue
Changes to work schedules to accommodate good and bad days
Families also play an important role in the treatment of fibromyalgia. Suffering from an “invisible” but chronic illness such as fibromyalgia can be socially isolating. It is important that the family members are supportive of treatment and are understanding when their loved one needs to rest.
The National Institute of Arthritis and Musculoskeletal and Skin Diseases (NIAMS) is sponsoring more research on fibromyalgia to better understand this disease, specifically in relation to diagnosis, causes, and better treatments.
To get a fibromyalgia diagnosis, click here to find a certified pain specialist in your area. They have dedicated experience working with fibromyalgia patients and will use the latest diagnostic guidelines to help you diagnose your condition.
The term “fibromyalgia” may be relatively new, but the condition itself has been around for quite a while. After several name changes, a definite set of diagnostic parameters are finally established for fibromyalgia.
The first known mention of fibromyalgia was in the 1800s, but at the time it was simply called “muscular rheumatism.”
When “muscular rheumatism” was first written about, doctors noted that it caused stiffness, aches, pains, tiredness, and difficulty speaking. In 1824, a doctor in Scotland first described the tender points that characterize fibromyalgia.
A psychiatrist in the United States described a condition called “neurasthenia” in 1880, which he believed was caused by stress. He ascribed the symptoms of widespread pain, fatigue, and psychological problems to neurasthenia.
The term “fibrositis” was introduced in 1904 by Sir William Gowers. “Fibro” refers to the body’s connective tissues. “Itis” indicated inflammation or swelling, so “fibritis” meant inflammation of the connective tissues. In 1913, a physician wrote more about fibritis, describing a worsening of symptoms as air pressure fell and rains came on. He also described temperature variations and fevers.
In the 1970s, Hugh Smythe described fibritis in papers and medical textbooks. This was the clearest, most cohesive description of the disease and its symptoms so far. The name was changed from “fibritis” to “fibromyalgia” in 1976, since inflammation was no longer believed to be the cause. “Myo” means muscles and “algia” means pain, so “fibromyalgia” means pain in the muscles and connective tissues.
Certain antidepressants were found to be effective in treating fibromyalgia in 1986. The Journal of the American Medical Association (JAMA) published an article about fibromyalgia in 1987. Also in that year, fibromyalgia was recognized by the American Medical Association (AMA) as a defined disease and cause of illness and disability. The American College of Rheumatology first published diagnostic criteria for fibromyalgia in 1990.
There is no definitive test for fibromyalgia, so it’s typically a diagnosis of exclusion, meaning that a person can only be diagnosed with fibromyalgia when every other possibility has been excluded.
The Mayo Clinic website explains why diagnosing fibromyalgia is so difficult, stating:
“Fibromyalgia symptoms include widespread body pain, fatigue, poor sleep and mood problems. But all of these symptoms are common to many other conditions. And because fibromyalgia symptoms can occur alone or along with other conditions, it can take time to tease out which symptom is caused by what problem. To make things even more confusing, fibromyalgia symptoms can come and go over time.”
Tender points are still used by many specialists during diagnoses. There are 18 potential tender points on the body, and the physician must be able to elicit a response on at least 11 of these tender points. However, knowing precisely where the tender points are and how much pressure to apply can be tricky, so general doctors use a different set of diagnostic criteria.
Widespread pain that’s lasted for at least three months
Presence of other symptoms, such as fatigue, waking up tired, or trouble thinking (often called “fibro fog”)
No other conditions that could be causing the symptoms
Additionally, some physicians may score patients’ responses to a series of questions to judge the severity of the widespread pain being experienced. For instance, several symptoms are given a score as far as symptom severity. Zero means no problems at all, while three means severe, pervasive, or life-disturbing. Then the scores for all the symptoms are added together. If this score is above a certain level, it’s considered positive for fibromyalgia. This positive result, in addition to other positive results and the absence of any other conditions that could explain the symptoms, will usually lead to a diagnosis of fibromyalgia.
Gender, health condition, genetics, and trauma are all thought to play a role in fibromyalgia. However, it’s not known if all or any of these are the actual cause of the condition. It’s only known that these factors play a part in determining an individual’s risk for developing fibromyalgia.
External triggers, such as viral infection or repetitive strain, and some preexisting conditions, such as rheumatoid arthritis or lupus, may make people more likely to develop fibromyalgia. Depression, post-traumatic stress syndrome, or other mental illnesses are often found in people who have fibromyalgia. Additionally, being overweight, being inactive, or smoking might increase the risk for fibromyalgia. Women are also much more likely to develop fibromyalgia, although men and children can develop the condition, too.
Studies have been conducted looking at the role of stress in triggering fibromyalgia. Employees in a stressful job environment tended to experience more pain. Also, women who’ve experienced relationships with violent abuse are at an increased risk for fibromyalgia. People who feel as though they have very little support or who had a poor psychological response to pain also seem to be an increased risk for fibromyalgia.
Even though the cause behind fibromyalgia is still unknown, and diagnosing it remains a challenge, it’s thanks to the collective history of fibromyalgia that we have any understanding of it today. The symptoms and tender points described in the 1820s, the psychological (cognitive) problems acknowledged in the 1880s, and the issues with temperature regulation noted in the early 1900s all helped define the condition as it’s understood today.
Results from Women Expressing Fibromyalgia’s Effects on their Everyday Lives (WE FEEL), illuminate the private, prolonged, and often agonizing, physical and emotional struggles that women with fibromyalgia face. The survey also reveals constructive, concrete ways to help ease suffering, including an earlier diagnosis and access to information and support.
Seven in ten (71%) do not seek help until their symptoms become intolerable.
For more than half (54%), diagnosis took a year or more; for one in four (23%), it took at least five years.
Patients whose diagnoses take longer are more likely to report severe symptoms (68%), compared to those diagnosed in less than a year (42%).
The perceived top barriers to proper diagnosis include HCPs not recognizing symptoms as fibromyalgia (50%) and the patient’s own lack of knowledge about the condition (48%).
Nine in ten (91%) feel relieved when they can finally connect a condition with their symptoms.
Patients diagnosed in less than a year are less likely to experience daily life challenges.
Nearly half (48%) of those who were diagnosed after five years or more stopped exercising compared to one third (33%) of those who were diagnosed in less than one year.
While more than four in 10 women (43%) said they rely most often on their spouse or significant other, only about a quarter (27%) said that person fully understands how fibromyalgia affects them.
A greater level of supportwas offered by spouses (43%), followed by children (33%), and friends (28%) when learning of a loved one’s diagnosis.
Only one of four (25%) said that they have the tools and resources available to help them manage their fibromyalgia.
Four in ten (42%) patients who take prescription medication report taking FDA-approved medication. Among those, 92% rank drug therapy as a successful treatment option in improving fibromyalgia symptoms.
Respondents said exercise (46%) and alternative therapies (43%), such as massage, meditation, and chiropractic care were also factors in improving their fibromyalgia symptoms.
Lifestyle changes were also helpful for nearly half (51%) of patients in improving fibromyalgia symptoms.
A greater number (56%) of those who received more support from their spouse reported that treatment had a positive impact on their day-to-day life compared to those who received the same amount of support or less (47%).
Nearly two-thirds (61%) of those who received more support from their children reported that treatment has improved their day-to-day life compared to those who received the same amount of support or less (48%).
*Methodology: Fielded by Harris Interactive | 508 respondents in 48 states | 48 questions; 20 minutes | ±4.4% margin of error
Fibromyalgia was once dismissed by many traditional medical practitioners as a phantom illness.
But that view is changing rapidly. Not only is fibromyalgia accepted as a diagnosable illness, it is also a syndrome that researchers are finding more complicated as new information emerges.
As recently as a year ago, many physicians still associated some of fibromyalgia’s symptoms with emotional problems, but that’s no longer the case.
A simple description of fibromyalgia is that it is a chronic syndrome characterized by widespread muscle pain and fatigue.
For still unknown reasons, people with fibromyalgia have increased sensitivity to pain that occurs in areas called their “tender points.” Common ones are the front of the knees, the elbows, the hip joints, the neck and spine. People may also experience sleep disturbances, morning stiffness, irritable bowel syndrome, anxiety and other symptoms.
According to the American College of Rheumatology, fibromyalgia affects 3 million to 6 million Americans, 80 percent to 90 percent of whom are women. The condition is most often diagnosed during middle age, but at least one of its symptoms appears earlier in life.
But is there a psychological tie-in strong enough to differentiate fibromyalgia from other similar diseases and conditions? Apparently not.
“Fibromyalgia patients are such a diverse group of patients, they cannot all be the same,” said Dr. Thorsten Giesecke, a University of Michigan research fellow.
Giesecke and his colleagues evaluated 97 fibromyalgia patients, including 85 women and 12 men. The patients underwent a two-day series of tests, answering questions about their coping strategies and personality traits — particularly their emotional well-being. They were also tested for sensitivity to pressure and pain.
“It’s generally been thought that fibromyalgia patients who have higher distress have higher pain sensitivities,” Giesecke said.
In other words, it was believed that those with fibromyalgia who were prone to emotional difficulties such as depression and anxiety were more likely to experience greater physical pain.
But his study didn’t bear that out. In fact, patients in one of the three groups in the study who had the highest pain levels had the lowest anxiety.
The term fibromyalgia comes from the Latin word for fibrous tissue (fibro) and the Greek ones for muscle (myo) and pain (algia). Tender points are specific locations on the body — 18 points on the neck, shoulders, back, hips and upper and lower extremities — where individuals with fibromyalgia feel pain in response to relatively slight pressure.
The U.S. government’s National Institute of Arthritis and Musculoskeletal and Skin Diseases says fibromyalgia patients often experience combinations of many other chronic and frustrating symptoms, including:
cognitive and memory problems, sometimes referred to as “fibro fog.”
Latest research indicates that fibromyalgia is the result of internal biochemical imbalances that cause physical symptoms such as pain, weakness and mental impairment. Because it is a syndrome — a collection of signs and symptoms — rather than a disease, fibromyalgia can’t be diagnosed by an invariable set of specific symptoms or reproducible laboratory findings.
Even with the findings about relatively small psychological influence, practical experience seems to indicate that stress may play a role. Roger H. Murphree, a Birmingham, Ala., chiropractor who specializes in treating patients with fibromyalgia and chronic fatigue syndrome, said he has seen a link between stress and the intensity of fibromyalgia.
“Most of us live in a world of stress,” Murphree said. “Something has to give, and it’s usually sleep. Meanwhile, we subsist on junk food, caffeine, alcohol and prescription medications. Such a lifestyle isn’t good for anyone. But for an unlucky few, the toll is severe.”
Dr. Jacob Teitelbaum, whose practice in Annapolis, Md., led him to do research into fibromyalgia and the closely related chronic fatigue syndrome, concluded that the body’s endocrine system could hold the clue to treatment. It’s a matter of how the body’s energy is marshaled, he said.
“Fibromyalgia is like the body blowing a fuse,” he explained. “The hypothalamus serves as humans’ internal fuse box. When the demands of living build up, stress increases and the hypothalamus shuts down. Because the circuit is overtaxed and the fuse is blown, the body simply can’t generate enough energy.”
“That causes muscles to cease functioning in a shortened position, resulting in pain all over the body and a general feeling of fatigue or weariness,” Teitelbaum said.
Murphree’s experience with hundreds of patients confirms Teitelbaum’s analogy. Most, he said, are either “Type A” perfectionists or “Type B” caregivers.
“Type A fibromyalgia patients work and work and work until they burn out,” said Murphree. “Type B patients give and give and give — nurturing their spouses, children, family and friends — until they break down. Anyone whose lifestyle includes very little downtime is at risk.”
Teitelbaum recommends a four–pronged approach to repair the “blown fuse” and turn the body’s current back on:
Restoration of sleep — at a minimum, eight to nine hours every night, using appropriate medications, as needed;
Restoration of a normal hormone balance, including thyroid, adrenal and reproductive hormones;
Appropriate treatment for infections that may be present as a consequence of the body’s depleted immune function;
Nutritional support, particularly with B complex vitamins, magnesium, zinc and malic acid.
Teitelbaum uses the acronym SHIN to summarize his treatment regimen. “S is for sleep, H for hormone balance, I for infection control, and N for nutrition,” he explained. “The important thing is that all four should be implemented in concert with one another for maximum therapeutic effect.”
Fibromyalgia patients have more “connectivity” between brain networks and regions of the brain involved in pain processing, which may help explain why sufferers feel pain even when there is no obvious cause, a new study suggests.
Researchers had 18 women with fibromyalgia undergo six-minute fMRI brain scans, and compared their results to women without the condition.
Participants were asked to rate the intensity of the pain they were feeling at the time of the test. Some people reported feeling little pain, while others reported feeling more intense pain.
Brain scans showed the connectivity, or neural activity, between certain brain networks and the insular cortex, a region of the brain involved in pain processing, was heightened in women with fibromyalgia compared to those without the condition.
The connectivity to the insular cortex was even stronger in participants who reported feeling more intense pain compared to milder pain, said study author Vitaly Napadow, a neuroscientist at Massachusetts General Hospital.
“We took advantage of the fact that there is a large discrepancy in the amount of pain patients happen to be in at the time they come in. Unfortunately some patients come in, and they are in a lot of pain. Other patients come in and they are not in pain,” Napadow said.
The study, by researchers from Massachusetts General Hospital and the University of Michigan, is published in the August issue of Arthritis & Rheumatism.
Fibromyalgia is a chronic pain syndrome that’s characterized by widespread pain, fatigue, insomnia, and the presence of multiple tender points. The syndrome can also cause psychological issues, including anxiety, depression and memory and concentration problems, sometimes called the “fibromyalgia fog.”
Prior research has shown that people with fibromyalgia feel a given amount of pain more intensely than others, Napadow explained. In other words, studies have shown a typical person might rate a painful stimuli a “one” on a scale or one to 10, while a person with fibromyalgia might rate the pain a 5 or higher.
The new study is different in that fibromyalgia patients’ pain responses were measured while they were at rest and not being exposed to anything painful, Napadow said.
The brain networks involved were the default mode network (DMN) and the right executive attention network (EAN). The DMN is involved in “self–referential thinking,” when you think about yourself or what’s happening to you, Napadow explained.
The EAN is involved in working memory and attention. When that brain network is occupied, or distracted, by pain, it may explain some of the cognitive issues that fibromyalgia patients experience, Napadow said.
Dr. Philip Mease, director of rheumatology research at Swedish Medical Center in Seattle and a member of the National Fibromyalgia Association medical advisory board, said the study provides insight into what may be going on in the brains of people with fibromyalgia.
“This work shows there is increased connectivity between different brain centers that connect the purely sensory pain processing centers of the brain with some of the emotional and evaluative parts of the brain, or areas of the brain that take a sensory stimulus and say, “How do I interpret this? How do I feel about this’?” Mease said.
For years, fibromyalgia has been a highly misunderstood syndrome, with some doctors doubting it even existed, and others attributing the pain to depression or other psychological issues.
That began to change early this decade, when brain scans showed pain-processing abnormalities in fibromyalgia patients, Mease said.
“That first neuroimaging study really demonstrated fibromyalgia patients were different than normal individuals, and at a neurobiological level, were truly experiencing more pain at lower intensities,” Mease said.
The new research moves understanding of the condition a step further, by exploring what’s happening in the brain during a resting state.
“Regardless of poking or prodding them, this study is trying to get at an understanding of what is crackling in the brain, intrinsically, such that they have this higher sensitivity,” Mease said.
About 10 million Americans are believed to have fibromyalgia, almost 90 percent of whom are women, according to the National Fibromyalgia Association. Sufferers report a history of widespread pain in all four quadrants of the body for at least three months, and pain in at least 11 of 18 “tender points.”
Patients with fibromyalgia who are severely obese have more severe symptoms and lower quality of life (QOL), according to a study published in the February issue of Arthritis Care & Research.
Chul-Hyun Kim, M.D., from the Mayo Clinic in Rochester, Minn., and associates measured body mass index (BMI) to determine its association with symptom severity and QOL in 888 patients in a treatment program for fibromyalgia. Participants completed the Fibromyalgia Impact Questionnaire (FIQ) and the Short Form 36 (SF-36) health survey.
The researchers found that 28.4 percent of patients were nonobese, 26.8 percent were overweight, 22.2 percent were moderately obese, and 22.6 percent were severely obese. Group differences were significant with respect to the number of tender points (P = 0.003) and the FIQ and SF-36 scores, after adjusting for age. For the group with the greater BMI, there were significantly worse FIQ total scores, and significantly worse scores in the FIQ subscales of physical fitness, work missed, job ability, pain, stiffness, and depression. Significantly poorer SF-36 scores were seen in these groups in physical functioning, pain index, general health perception, role emotional, and physical component summary. The differences were mainly in the severely obese group compared with the other groups.
“In patients with fibromyalgia, severe obesity (BMI ≥35.0 kg/m²) is associated with higher levels of fibromyalgia symptoms and lower levels of QOL,” the authors write.
Fibromyalgia is a mysterious and misunderstood illness, but researchers may have uncovered at least one key to the disease’s origin: insulin resistance.
The new research compared a small group of people with fibromyalgia to two groups of healthy people and noted that a long-term measure of blood sugar levels was higher in the people with fibromyalgia. Insulin resistance develops when the body starts to struggle with breaking down sugar.
To see if treating those higher blood sugar levels might help, the researchers gave people who had blood sugar levels in the pre-diabetic range or higher a diabetes medication called metformin. People taking metformin reported significantly lower pain scores, according to the study.
“We combined metformin with standard drugs used for fibromyalgia and saw a much greater degree of pain relief,” said study author Dr. Miguel Pappolla. He is a professor of neurology at the University of Texas Medical Branch at Galveston.
In fact, Pappolla said, the additional pain relief was so significant that the researchers actually called patients on different days to re-check their pain scores.
Because this is a preliminary finding, the researchers aren’t sure how insulin resistance might contribute to fibromyalgia or how metformin might reduce pain. “Metformin may have some analgesic [pain-relieving] activity on its own,” Pappolla said.
Fibromyalgia is a condition that causes widespread pain, fatigue, sleep problems and distress, according to the U.S. Centers for Disease Control and Prevention. Even celebrities aren’t spared from this painful condition — Lady Gaga reportedly had to cancel concerts on her tour due to pain from fibromyalgia.
Though the cause of the disorder isn’t clear, it appears that people with fibromyalgia may be more sensitive to pain than other people — what the CDC calls abnormal pain processing.
Pappolla said that studies have shown differences in the brain between people with fibromyalgia and those without, such as areas with a lower blood flow than expected. The researchers noted that similar problems have been seen in people with diabetes.
The study included 23 people with fibromyalgia. The researchers compared their hemoglobin A1c levels to large groups of healthy people from two other studies. Hemoglobin A1c is a simple blood test that measures what someone’s blood sugar levels were during the past two or three months. A level of 5.7% to 6.4% is considered pre-diabetes, according to the American Diabetes Association. A level of 6.5% or higher means a person has diabetes.
Only six of those with fibromyalgia had normal blood sugar levels. Sixteen had levels considered pre-diabetes and one met the criteria for diabetes.
When the researchers compared the average blood sugar levels of the fibromyalgia group to healthy age-matched people in the other studies, they saw that the blood sugar levels were higher in the people with fibromyalgia, suggesting insulin resistance.
The findings were published online recently in the journal PLOS ONE.
Dr. Edward Rubin, an anesthesiologist and pain management specialist at Long Island Jewish Medical Center, said, “It’s interesting that there’s a possible connection between fibromyalgia and blood sugar. We’ve been attacking the symptoms of fibromyalgia, but we don’t have a good understanding of the root cause of fibromyalgia.”
Rubin, who wasn’t involved in the study, said there may be enough evidence here to try metformin along with other medications used for fibromyalgia for people whose blood sugar levels fall outside of the normal range, to see if they have a positive response.
Dr. Bharat Kumar, from the University of Iowa Hospitals and Clinics, said this study shows people with the disease that there is hope.
“People with fibromyalgia are often told [falsely] that they have a disease that simply cannot be managed. This article shows that it’s not true. Although it’s unclear if metformin will work for every person suffering from fibromyalgia, there is active research into finding solutions for this frustrating and overlooked condition,” he said.
Kumar said it’s biologically plausible that insulin could have an effect on pain. “We know that other hormone abnormalities can cause fibromyalgia-like symptoms, so [this finding] is not too surprising,” he added.
Still, he said, he didn’t expect that metformin would be a “silver bullet” for all fibromyalgia pain. He said there are likely a number of causes of the disease.
At the 2014 American Pain Society Meeting, a hot topic of conversation focused around the emotional and physical repercussions following a car accident.
Because persistent pain and disability often occur after whiplash or other musculoskeletal injuries, it is of interest to understand to what extent poor expectations of recovery influence overall outcomes.
A 2007 study published in the Journal of Rheumatology concluded that poor expectations of recovery can be a powerful predictor of adverse outcomes. To expand on these findings, a team from the University of North Carolina has now conducted research to further analyse recovery outcomes following accidents.
In the study, it was found that physical recovery expectations were lowest in the hours just following the accident due to high stress levels and emotion. This acute psychological distress was most strongly associated with poorer expected recovery.
Additionally, a large factor in expected recovery period was the overall mentality of the patients prior to the accident. Patients who had reported good physical health and traits of optimism before the accident in turn had shorter estimated recovery time.
In contrast, those who had a slightly more negative outlook, perhaps having previously suffered pain, felt that the other driver was at fault, or suffered from depressive symptoms, had a longer expected recovery.
In short, acute pain in addition to preexisting psychological symptoms were found to be directly correlated with physical and emotional recovery following a traumatic accident.
Our doctors spend a lot of time asking us questions like ‘what are your symptoms?’ and ‘how’s your sleep?’ So why is it that no one seems to ask us how fibromyalgia is affecting our relationships? Our spouses, our children, our friends and our colleagues – all of them are affected when it comes to fibromyalgia, but to what extent?
The National Fibromyalgia & Chronic Pain Association recently posted a survey asking about fibromyalgia symptoms and the impact that fibromyalgia had on relationships with partners/spouses, children, and friends. The survey was completed by over 6000 people with fibromyalgia, making it one of the largest fibromyalgia surveys. The results were published in the medical journal Musculoskeletal Care.
Out of those who participated, 96% were women and most were between 45 and 64 years old. The results were as follows:
Over one in four people reported that their spouse/partner did not understand their fibromyalgia, and half of people said fibromyalgia had damaged a current or previous relationship with a spouse or partner. 10% said fibromyalgia contributed to a break-up of a relationship.
Over 70% of people surveyed said they had children who were old enough to understand their FM. One in three said their children resented when they couldn’t participate in activities with them, and one in four said their children thought they exaggerated their pain.
In general, those surveyed explained that fibromyalgia had less of a negative impact on friendships than with spouses/ partners or children. That being said, many people felt that having fibromyalgia resulted in eventually losing friends, as many stopped calling or extending invitations.
Here at The Chronicillness.co team, we don’t want your relationships to suffer on account of your fibromyalgia. We are constantly taking new research and information into consideration when finding the correct treatment path for our patients, and strongly believe a multidisciplinary approach to treatment can help manage symptoms for a better quality of life.
