- Fibro Fog – The 7 Little-Known Cognitive Symptoms of Fibromyalgia
- Cognitive Symptoms of Fibromyalgia
- Combating the Symptoms of Fibromyalgia
- Upper Cervical Chiropractic and Fibromyalgia
- 5 Celebrities with Fibromyalgia
- Celebrities with fibromyalgia
- 1. Morgan Freeman
- 2. Sinead O’Connor
- 3. Janeane Garofalo
- 4. Jo Guest
- 5. Rosie Hamlin
- Speaking out and taking action
- 7 Damaging Misconceptions About Fibromyalgia
- Misconception #1: Fibromyalgia is all in your head
- Misconception #2: Only women develop fibromyalgia
- Misconception #3: Diet can heal fibromyalgia
- Misconception #4: Fibromyalgia isn’t a real disease
- Misconception #5: Fibromyalgia and chronic fatigue syndrome (CFS) are the same thing
- Misconception #6: People with fibromyalgia should avoid exercise
- Misconception #7: Fibromyalgia is not serious
- GET FREE EMAIL UPDATES!
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- Tackling Brain Fog: Expert Advice for Clearer Thinking
- Symptoms & causes
- Diagnosis & tests
- Treatments & medication
- Additional resources
- Sudden, Unexpected Death in Chronic Pain Patients
Fibro Fog – The 7 Little-Known Cognitive Symptoms of Fibromyalgia
Most people know fibromyalgia as a debilitating pain condition. However, more than half of patients also present with a series of cognitive symptoms that have been dubbed fibro fog (sometimes called brain fog when associated with other conditions). What decline in mental faculties may a fibromyalgia sufferer be dealing with? This article can help patients to realize they are not alone and that there is hope out there. It can also help the relatives and friends of patients to be more understanding of this condition.
Cognitive Symptoms of Fibromyalgia
#1 – Memory Problems
Research has revealed that fibromyalgia patients suffer from impairment in various types of memory including:
- Semantic memory – This involves the ability to recall general facts.
- Working memory – This is a segment of short-term memory that is involved in learning and processing facts. As a result, a person with fibromyalgia may struggle with language skills (see point #3), math, reading, and other processes that require temporarily storing data mentally.
- Metamemory – This involves a self-awareness of one’s own memory. It affects a person’s ability to use memories as an aid in learning. Since metamemory is very important when it comes to decision making, impaired judgment may result when this part of the memory is affected (see point #4).
#2 – Concentration Problems
A person suffering from fibro fog may feel like he or she has ADD. It can be difficult to focus on assignments at work or at home or even just on a conversation. Lack of concentration can add to the problems with short-term memory and retention, making it tough to remember what you went to store for, what you did with your keys, or what was last said in a conversation.
#3 – Inhibited Verbal Skills
It can be very difficult for a person with fibromyalgia to find the right word at times, even if he or she is known to have a good vocabulary. This goes back to problems with both the semantic and working memory. The lack of ability to recall general facts affects one’s vocab recall. The inhibited working memory makes it tougher to remember the first half of a sentence while searching for the words to say the second half. As a result, verbal fluency suffers and it can be tougher to learn new verbal or even reading skills. Speech may take place slowly or be altered in other ways.
#4 – Impaired Judgment
This goes back to the effect of fibromyalgia on metamemory. When you can’t utilize memory to make future decisions, it can be easy to repeat past mistakes. It’s not that the memories themselves cannot be recalled. The patient has a reduced ability to connect memories to outcomes in order to predict the consequences of present actions.
#5 – Impaired Cognitive Abilities
Studies also show that fibromyalgia patients have a reduced ability to carry out simple cognitive tasks. Everything from performing a simple computation in one’s head to executing problem-solving tasks are a part of the cognitive function of the brain.
#6 – Difficulty Multi-Tasking
The lack of ability to concentrate or focus is evident when a patient does multiple tasks simultaneously. The instructions on how to complete each task may become jumbled, some tasks may be completely forgotten, or all assignments may be partially completed but not finalized.
#7 – Depression and Anxiety
While these conditions are not a part of the cognitive issues of fibromyalgia, researchers have found that fibro fog seems to be worse for patients who are also dealing with depression and anxiety, sleep issues, or hormone fluctuations.
Combating the Symptoms of Fibromyalgia
There are a number of ways that you can counteract these symptoms at home through a few lifestyle adjustments. A few of these practices include:
- Using Reminders – You may need some trial and error to find out what works best for you. Keep a calendar, write out sticky notes, set alarms on your phone – whatever helps you personally to remember things the best.
- Maintain a Routine – For example, if you always hang your keys on a rack next to the door, you never have to wonder where you left them last. When you clean the house, always start with the same task and follow a specific order, so you won’t leave something out. Routine can be a big help in remembering tasks and completing them.
- Reduce Caffeine Intake – Caffeine can enhance attention and retention problems. You may even choose to avoid caffeine altogether.
- Have a Regular Sleep Schedule – Lack of sleep can enhance the cognitive symptoms of fibromyalgia.
- A Nutritious Diet – Proper nutrition is vital for cognitive processing.
Upper Cervical Chiropractic and Fibromyalgia
You may also benefit from trying to go after fibromyalgia at its source. Many cognitive problems and pain conditions can be related to a specific misalignment of the C1 (atlas) vertebra. Such a misalignment can inhibit proper flow of oxygen-rich blood to the brain as well as affect brainstem function.
Upper cervical chiropractic is a subspecialty in the chiropractic field that involves very precise measurements of the atlas and gentle adjustments that result in improved blood flow and nervous system function. As a result, some fibromyalgia patients have seen the condition completely resolve under upper cervical chiropractic care.
To learn more about upper cervical chiropractic and how it may benefit you or a loved one, contact a practitioner in your area and schedule a no-obligation consultation. If may be your first step toward conquering the fog once and for all.
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5 Celebrities with Fibromyalgia
Celebrities with fibromyalgia
Fibromyalgia is a painful condition with unknown causes. Common symptoms include:
- widespread pain
- digestive issues
- numb hands and feet
- fatigue and sleeping difficulties
- anxiety and depression
The Centers for Disease Control and Prevention (CDC) estimates that about 2 percent of American adults have fibromyalgia. It’s also most common in middle-aged women, although the reasons for this aren’t know.
There are many unknown aspects of fibromyalgia that need attention to better help people with this condition. A small percentage of the population have been diagnosed with fibromyalgia. But the actual number could be much higher from undiagnosed cases.
Like other diseases, fibromyalgia doesn’t discriminate. More celebrities with the condition are speaking out more than ever before. Learn about what they have to say about fibromyalgia.
Read more: Is fibromyalgia real or imagined? “
1. Morgan Freeman
Morgan Freeman is a celebrity that seems to be everywhere, whether he’s acting in movies, playing voices for animated roles, or narrating films. On top of that, Freeman is also an outspoken advocate for fibromyalgia awareness.
In an interview with Esquiremagazine, Freeman discussed not being able to do certain activities anymore, such as sailing, due to his fibromyalgia. Yet he wanted readers to know that the condition isn’t all gloomy. He stated, “There is a point to changes like these. I have to move on to other things, to other conceptions of myself. I play golf. I still work. And I can be pretty happy just walking the land.” Life doesn’t stop with fibromyalgia, and Freeman wants others to know this.
2. Sinead O’Connor
This singer-songwriter is no stranger to controversial and sensitive topics. Despite her talent and Grammy-winning record, in 2013 O’Connor abruptly declared she was quitting the music business. She attributed her departure to severe pain and fatigue due to fibromyalgia. At first, O’Connor was quoted as saying that her career in music was to blame. “It rendered me invisible. Murdered my soul. I’m never going back to music,” she announced.
O’Connor has had her share of health issues, including bipolar disorder, PTSD, and recovery from a hysterectomy. After taking time off from her career, O’Connor later said, “When you get something like fibromyalgia it’s a gift, actually, because you have to reassess your life.” O’Connor has since returned to her musical career.
3. Janeane Garofalo
Since her career took off in the 1990s, comedian Janeane Garofalo has made audiences laugh at her dry sense of humor and cynicism. While Garofalo has covered a wide range of topics over the years, her health has taken center stage recently. She hasn’t been widely quoted in interviews or other more formal contexts. But she talks about her fibromyalgia as a part of her stand-up act. In 2009, she told her audience, “I had no idea I was chronically dissatisfied,” in reference to her new treatment involving antidepressants.
Other celebrities have demonstrated it’s important to keep a positive outlook when dealing with fibromyalgia. And as Garofalo demonstrates, it may also help to laugh it off once in a while.
Learn more: How does fibromyalgia affect women? “
4. Jo Guest
Jo Guest is a former British model who had to quit her career due to severe fibromyalgia symptoms. In a 2008 article published in the Daily Mail, Guest was quite blunt about how fibromyalgia changed her life. “At first I thought it was just a virus, but it just wouldn’t stop. I was getting up and being sick all morning and having to spend the afternoon in bed,” she recalled. At first, Guest’s doctor wasn’t able to figure out what was wrong with her. “When you come out of hospital and you’re told everything’s normal, you should be happy, but I don’t want to be told everything’s normal — I just want to be told what’s wrong with me,” she said.
Since 2008, more awareness has given way to earlier treatment interventions that help people with fibromyalgia have a better quality of life. Still, the extent of the mystery condition can indeed be career-changing, as in Guest’s case.
5. Rosie Hamlin
Rosie Hamlin, the late lead singer of Rosie and the Originals, was beloved for her musical talents and her fearlessness in taking on fibromyalgia. In an interview with Fibromyalgia Aware magazine, Hamlin discussed her struggles with the condition. It depleted her ability to take on normal everyday tasks. She said, “I’ve always been extremely energetic and very, very busy … It’s taken me a couple of years now to have to deal with fibromyalgia, and I have to re-think my life, re-organize, and realize — just having to realize I’m so limited now. I don’t like it, but I have to deal with it.”
Hamlin moved on from a grueling schedule in her music career to one that focused on painting and fibromyalgia awareness. She stayed active until her death in April 2017, at the age of 71.
Speaking out and taking action
Fibromyalgia is very real for those who experience chronic, widespread symptoms. It’s important to continue to work with your medical team. If a treatment method doesn’t work, don’t give up — seeking out new therapies can make a world of a difference. It’s also important to realize that you’re not alone. Seeking out support from other people with fibromyalgia can help.
Read more: The best fibromyalgia blogs of the year “
7 Damaging Misconceptions About Fibromyalgia
Fibromyalgia is a widespread chronic pain condition that affects an estimated five million people in the U.S. Today is Fibromyalgia Awareness Day, and we think it’s a great time to dispel some of the common misconceptions about this debilitating, painful condition. Here are seven damaging misconceptions about fibromyalgia.
Misconception #1: Fibromyalgia is all in your head
This is perhaps the most damaging misconceptions about fibromyalgia. Because fibromyalgia is an invisible illness with no discernible cause, it can be easy to dismiss fibromyalgia sufferers and their reports of pain. Many people can’t believe that someone who looks healthy could actually be in debilitating pain.
Fibro fact: The pain is real
Fibromyalgia changes the way the brain processes pain signals, sending pain-receiving neurons into overdrive at the slightest stimulation. The changes that occur in the brain are measureable. Pain points can be located in specific areas on the body, or the patient may experience widespread pain. Many fibromyalgia patients try to remain stoic and work through the pain, but during painful flare-ups, pain can be debilitating and make the tasks of daily life impossible.
Misconception #2: Only women develop fibromyalgia
Between 75 and 90% of diagnosed fibromyalgia sufferers are women between the ages of 20 and 50. Women do have a much higher risk of developing fibromyalgia, possibly due in part to the role that hormones play in fibromyalgia.
Fibro fact: Men have fibromyalgia, too
While women do have a much higher rate of diagnosis than men, men are also susceptible to developing fibromyalgia. That they are diagnosed at a much lower rate may have to do with actual incidence of fibromyalgia, but there may also be cultural factors at play. Men are much less likely to report pain due to the perception in the U.S. that pain is a sign of weakness. In reality, there may be many more men in the U.S with undiagnosed fibromyalgia.
Misconception #3: Diet can heal fibromyalgia
Many people credit the wonders of the gluten-free, sugar-free, dairy-free diets for their successful treatment of fibromyalgia, but there is very little scientifically valid research that indicates that diet alone can cure fibromyalgia.
Fibro fact: Diet may help with some symptoms
It is true that everyone’s biology is a bit different when it comes to food. Gluten, sugar, and dairy products are all highly inflammatory and may contribute to painful flare-ups. While there is no known cure for fibromyalgia, keeping track of pain symptoms and food concurrently can give you an idea of which foods seem to trigger more pain. A poor diet may contribute to obesity or other health conditions that can exacerbate fibromyalgia symptoms as well.
Misconception #4: Fibromyalgia isn’t a real disease
This misconception has a grain of truth. Diseases have specific and traceable causes. Since fibromyalgia does not have a set of causes that lead to diagnosis, it is not technically a disease.
Fibro fact: Fibromyalgia is a disorder
Also known as a syndrome, fibromyalgia is classified as a disorder because it is a collection of symptoms that occur together. The most prominent symptom is pain, but there are over 200 other symptoms that include gastrointestinal issues and mood disorders. Just because it is not considered a disease with a traceable cause doesn’t mean fibromyalgia is any less serious.
Misconception #5: Fibromyalgia and chronic fatigue syndrome (CFS) are the same thing
Because fatigue can be a major symptom of fibromyalgia, many would try to put these two conditions together under the same umbrella, treating them the same way.
Fibro fact: Fibromyalgia and CFS are not the same
People with fibromyalgia may also be diagnosed with chronic fatigue, but the connection doesn’t necessarily go both ways. In fact, many of those with CFS may have no pain at all, just unrelenting fatigue. They are completely different disorders that happen to share some symptoms.
Misconception #6: People with fibromyalgia should avoid exercise
It would seem to make sense that when movement makes pain worse, patients should move as little as possible, right? For a long time doctors would recommend limiting physical activity using this rationale. This makes for one of the most damaging misconceptions about fibromyalgia, when it comes to the actual body.
Fibro fact: Exercise can ease fibromyalgia pain
Joints that ache and muscles that hurt due to fibromyalgia are like rusty gates that need oil. Proper exercise can help fibromyalgia patients slowly and carefully smooth out those pains. It is important to start slowly and build up, but some exercise every day is now a standard recommendation for managing fibromyalgia pain.
Misconception #7: Fibromyalgia is not serious
Because a fibromyalgia patient’s life is not in immediate danger, many feel that fibromyalgia is not a particularly serious disorder.
Fibro fact: Fibromyalgia can be life-threatening
While it’s true that fibromyalgia does not pose an immediate risk of death, chronic pain poses its own set of health risks that can be life-threatening. People in chronic pain often suffer comorbid physical and mental conditions, including diabetes, heart disease, and mood disorders. Fibromyalgia puts a person at much higher risk for depression, and the vast majority of completed suicide attempts are carried out by those with a history of depression.
Fibromyalgia wears patients and their families down over time. While it may not require immediate attention to prevent imminent death, if left untreated, fibromyalgia increases a person’s chance of early death in a number of different ways.
If you or someone you love suffers from fibromyalgia, what are some common misconceptions about fibromyalgia that you have heard?
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Tackling Brain Fog: Expert Advice for Clearer Thinking
This common but often unspoken symptom of chronic pain can mess with your memory and mental acuity. Here’s how to unblock the haze.
Michele Kaseta of Grosse Pointe, Michigan, has been living with chronic pain for 30 years. She says the pain—caused by temporomandibular joint issues (TMJ) and fibromyalgia—changed her life. “My family has suffered; it caused my divorce.”
But constant pain isn’t her only challenge. Cognitive issues that accompany her condition, known as “brain fog,” have also been difficult. Brain fog is a collection of symptoms that include short-term memory loss, difficulty concentrating, and a mental slowness that makes it harder to process information.
Michele says the condition reduced her quality of life and even delayed her academic career. Earning her doctorate “should have been done a long, long time ago,” says the 52-year-old Wayne State University administrator and lecturer who recently completed her dissertation.
“Brain fog becomes a real problem when it persists over weeks and months,” as it can with a chronic illness, explains Marian Rissenberg, PhD, a clinical neuropsychologist in Katona, New York. “Brain fog reflects impaired function of the executive system…the most broadly and richly interconnected neural network in the brain,” which plays a key role in problem-solving, time management, and focus. She thinks of brain fog “as the brain in power saver mode.”
Studies show that “between 15 and 40% of patients with chronic pain can have” brain fog, adds Vinnidhy Dave, DO, director of medical pain management at the Hospital for Special Surgery in New York City. While it can occur with any chronic pain condition, the most common are fibromyalgia, rheumatoid arthritis, and complex regional pain syndrome (CRPS).
Causes & Cures
So what causes these cognitive problems, and how can they be fixed? Many factors play a role in brain fog and there is no “magic pill” to resolve it. To get to the bottom of the problem, experts advise that doctors review the patient’s medications, lifestyle, mental health, and how well the underlying illness is controlled. “The bottom line is to treat the total picture,” says W. Michael Hooten, MD, American Academy of Pain Medicine director-at-large and professor of anesthesiology at the Mayo Clinic in Rochester, Minnesota. Dr. Hooten is also a member of the PPM Editorial Advisory Board. “Don’t try to just treat the cognitive problems.”
While higher doses of opioids are known to reduce mental clarity, other medications, such as the neuropathic agents, gabapentin, pregabalin, amitriptyline, and nortriptyline can have the same effect. If a medication is suspected of contributing to brain fog, reducing the dosage or trying an alternative may help.
No matter the pain condition, reducing disease activity—that is, how prevalent it is—often improves mental clarity. Ms. Kaseta says she believes her brain fog worsens when her pain is most intense and improves when she’s feeling better. “Getting the pain better controlled…and working with your to find the right medications,” can help, says Dr. Dave.
Pain can make sleep difficult, and sleep deprivation—a known cause of mental sluggishness and memory loss—is a common complaint among individuals living with chronic pain conditions. “The first thing I try to do is get the patient on a routine to sleep better at night,” says Dr. Dave. He suggests adopting regular sleep and wake times, and avoiding the use of computers and other electronic devices, which stimulate the brain with white light, an hour or two before going to bed. Patients should also avoid caffeine and large meals a few hours before sleep, and avoid watching in bed. “You want your brain to associate the bed with a place of sleep only,” he explains.
While strenuous exercise may be inappropriate for some patients, physical activity is generally good for those with chronic pain. Yoga and Tai Chi can be especially helpful, improving sleep, reducing stress, and enhancing quality of life. “Exercise has been shown in multiple, randomized trials to have significant benefits, on not only pain, but functionality and on cognitive behavioral as well,” says Dr. Hooten.
A healthy diet can help as well. A candy bar or salty snack may provide a quick boost, but it is short-lived, and consuming empty calories can result in weight gain and related health hazards. To avoid this, Dr. Rissenberg advises patients to “eat well and regularly.” Setting regular times to eat whole foods, such as fruits and vegetables, and healthy proteins, such as fish and nuts, makes junk food less tempting, she says.
Depression, anxiety, and other mental health issues often accompany chronic pain and can contribute to brain fog. A recent study of fibromyalgia patients found that concurrent depression, anxiety, and pain catastrophizing (an expectation of negative outcomes and a lack of control) contributed to pain and symptoms of mental slowing, attention problems, and short-term memory loss. Addressing these issues through therapy and, when appropriate, antidepressant medications, can reduce pain and improve mental clarity.
In addition to tweaking your lifestyle to alleviate memory and concentration challenges, try creating a system to tackle tasks when brain fog attacks, advises Dr. Rissenberg. She recommends using a paper planner rather than electronic devices because paper and pen can provide helpful sensory cues. She encourages patients to create routines they can rely on when brain fog sets in—for example, returning phone calls daily at a set time and scheduling grocery shopping on a particular day of the week.
“Circle your wagons, focus on wellness and then get really regimented,” with systems that make completing tasks automatic, says Dr. Rissenberg.
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Continue Reading: Mental and Emotional Therapy for Fibromyalgia
- Sleep — Getting eight hours of sleep a night is critical, but make sure your sleep, pain or other medications are not the cause of your feeling foggy the next day. Add natural treatments at bedtime such as melatonin, calcium and magnesium. These are less likely to cause brain fog and will lower the amount of medications needed.
- In men, optimize testosterone; and in women, estrogen and progesterone. If you get irritable when hungry, optimize adrenal support, as recurrent low blood sugar also can trigger brain fog.
- If you have nasal congestion or sinusitis or irritable bowel syndrome (gas, bloating, diarrhea or constipation) you likely have Candida/yeast overgrowth, and this can leave you very foggy. If so, look into taking the medication Diflucan while avoiding sugar. Probiotic pearls and anti-yeast herbals can also help.
- Optimize your nutritional support with a good multi-vitamin supplement and take ribose — in a study of 257 CFS/FMS patients, a daily intake of ribose not only increased energy an average of 61 percent, but also improved mental clarity an average 30 percent and overall well being 37 percent. Also ask your physician about B12 injections. If you have dry eyes, dry mouth or depression, increase your consumption of fish oil through supplementation or by having 3-4 servings of tuna or salmon each week.
- Stay hydrated. If your mouth or lips are dry, you’re dehydrated. It’s amazing how the mind can clear significantly after simply drinking a glass of cool water. Getting fresh air and sunshine (in moderation — don’t burn) can also help.
- So called “energy drinks” loaded with caffeine and sugar are loan sharks. Avoid them. Instead, drink 1-2 cups of tea (made from real tea bags or leaves — not the powdered/bottled stuff loaded with sugar). This is often enough to jump start your brain in a healthy way without crashing you later, and the antioxidants in 1-2 cups of tea a day help your CFS and overall health as well.
Fibromyalgia is a chronic condition characterized mainly by fatigue and widespread pain in muscles and joints. It affects about 2 percent of the U.S. population and seven times more women than men, according to the Centers for Disease Control and Prevention. It is also associated with other inflammatory disorders. For example, 17 percent of patients with arthritis and also suffer from fibromyalgia, according to a study published by the National Institutes of Health.
Symptoms & causes
Fibromyalgia is mainly defined by chronic widespread muscular pain and tenderness, but it can also include a wide variety of symptoms, according to the National Institute of Arthritis and Musculoskeletal and Skin Diseases (NIAMS). Symptoms include:
- Morning stiffness
- Irritable bowel syndrome
- Tingling in the fingers and extremities
- Sensitivity to loud noises or bright lights
- Cognitive and memory problems known as “fibro fog”
- Trouble sleeping
- Painful menstrual periods
- Restless legs syndrome
- Sensitivity to hot or cold
Very little is known about the exact cause of fibromyalgia. In fact, debates persist on whether fibromyalgia is an actual disease that can be clearly defined and cured, or if it’s a catch-all diagnosis based on vague clinical criteria. Experts today think fibromyalgia could be associated with genetics, infections, physical or emotional trauma, or a combination of all these, according to the Mayo Clinic. Some researchers also believe that fibromyalgia may be due to problems with the neuroendocrine and autonomic nervous systems.
On its own, fibromyalgia is usually a nonfatal disease. It accounted for about 23 deaths a year between 1979 and 1998, according to the CDC. In fact, the CDC has found that the mortality rate of fibromyalgia patients is comparable to that of the general population.
A study published in the journal Arthritis Care & Research found that out of 8,186 fibromyalgia patients seen between 1974 and 2009, fibromyalgia did not increase the likelihood of death. The study did find that the risk of death from suicide and accidents was increased, though.
Fibromyalgia is also often associated with psychiatric disorders. Adults with fibromyalgia are 3.4 times more likely to be diagnosed with depression than people without the disease, according to the CDC. A 2008 study published in the Clinical Journal of Pain looked at 76 adolescents with fibromyalgia found that 67.1 percent of patients had at least one current psychiatric diagnosis, and 71.5 percent had at least one lifetime psychiatric diagnosis. More than half of the psychiatric diagnoses were anxiety disorder.
Diagnosis & tests
In 2010, the American College of Rheumatology released guidelines for the diagnosis of fibromyalgia. Following the guidelines, doctors use a checklist of areas of the body — lower left leg, upper right arm, left hip, for example — to find out how widespread the pain is. They also ask, on a scale from 0 to 3, how severe symptoms are. They then tally the results into a widespread pain index (WPI) and symptom severity (SS) score. According to the guidelines, a patient “satisfies diagnostic criteria” if three conditions are met:
- The WPI and SS scores indicate a certain level of pain and severity.
- The symptoms have been consistent for at least three months.
- The patient does not have a disorder that would explain the pain.
Treatments & medication
Anti-seizure drugs have shown promise for the treatment of fibromyalgia. Pregabalin (marketed as Lyrica) and two antidepressants, duloxetine (Cymbalta) and milnacipran (Savella), are currently approved by the Food and Drug Administration for treating fibromyalgia, according to the Mayo Clinic. Over-the-counter painkillers, including acetaminophen (such as Tylenol) or nonsteroidal anti-inflammatory drugs (such as aspirin and ibuprofen), may slightly ease the pain and stiffness caused by fibromyalgia.
Since fibromyalgia has a variety of symptoms, a combination of treatments is often recommended in addition to medication. A 2011 study published in the Journal of Clinical Rheumatologyshows that increasing the number of steps a patient walked by 54 percent helped improve the patient’s body functions by 18 percent and reduced the participant’s pain by 35 percent.
Exercising for 45 minutes every day is helpful, said Dr. Kevin Hackshaw, a rheumatologist at the Ohio State University Wexner Medical Center. “Helpful exercises like tai-chi or yoga are also beneficial. The worst thing to do is nothing,” Hackshaw told Live Science.
An alternative therapy, acupuncture, reduced pain in patients with fibromyalgia, according to a 2006 study conducted by the Mayo Clinic. However, its positive effects on fibromyalgia are still uncertain since another review published in the journal Rheumatology points out that the small therapeutic effect of acupuncture is not clearly distinguishable from experimental bias.
There are some at-home treatments that may be useful, as well, according to Dr. Jacob Teitelbaum, director of the Annapolis Center for Effective CFS/Fibromyalgia Therapies in Maryland. “Herbal pain relief can be found with special highly absorbed curcumin products (a substance found in turmeric), willow bark, Comfrey cream and soaking in a hot bath with 2 cups of Epsom (magnesium) salts,” he told Live Science.
NIAMS has a booklet titled Questions and Answers About Fibromyalgia.
These organizations provide information and support for people with the disorder:
- National Fibromyalgia & Chronic Pain Association
- National Fibromyalgia Association
- American Fibromyalgia Syndrome Association
I might have accepted this explanation—because I was used to accepting undiagnosable, phantom explanations for my lifelong symptoms—but deep down I knew it was something else for one simple reason: The pain wasn’t gone. It was never gone. I could feel my body reeling. Completely going to pieces was the only way it could signal its need to finally be heard out.
During that first trip to the ER in 2011, doctors said I was probably still experiencing “spasms” after passing the kidney stone and sent home. Four days later, I was back in the ER. Those spasms morphed into full-body sensitivity, concentrated in my legs and throughout my back. Doctors tossed around scary terms like “aortic dissection” and “lupus,” neither of which turned out to be correct. So I went home again.
Eventually, the pain moved to my head; so intense that I could not touch it, apply pressure, or even lay it on a pillow. The deep throbbing also made a stop at my heart, resulting in chest pain that mimicked a heart attack and shot down my left arm. I was frightened and frazzled from all the tests, the lack of sleep and the pain—shooting, stabbing, throbbing, and dashing its way through my body. On my third visit to the hospital, with unwashed hair and burnt-red eyes from all the crying I’d been doing, one doctor held my hand and promised me I wasn’t going to die that day.
I didn’t. But I didn’t get answers either. I went back and forth to the hospital five times that summer. After countless tests, more visits with my PCP, late-night trips to the ER for chest pain that you cannot ignore, and a flurry of pain meds like oxycodone and tramadol, I was finally told I had fibromyalgia.
Fibromyalgia is still somewhat of a black box to the medical community. It is a diagnosis of exclusion; to get the label, you must have pain in all four quadrants of the body for more than three months. Often, you have at least some of the 18 fibro “tender spots” on your body—on your legs, on your shoulders, on the back of your head—that trigger pain when pressed.
The condition seems to impact the central nervous system. It affects the way the brain processes messages, seeming to misread everyday sensations as full-blown pain signals. It’s also possible those with fibromyalgia have higher levels of a chemical found in the cerebrospinal fluid, substance P, which sends pain impulses to the brain. There are lots of theories, but few firm answers—and none that seems to explain everyone’s fibromyalgia case.
We do know that fibromyalgia is more of a label than a diagnosis, encompassing a web of interconnected conditions and symptoms. Along with fibro, I also have irritable bowel syndrome (IBS), affecting my digestive system; interstitial cystitis, which impacts my urinary tract; costochondritis, which refers to pain in the chest wall that often mimics heart attack; PMDD, which is just like PMS with amplified pain and larger mood swings; and TMJ, which leads to bouts of jaw pain. All my conditions are treated separately, which means a lot of doctor appointments, a lot of medications, and a lot of lifestyle adjustments.
New Year’s 2015Courtesy Of The Writer
Sudden, Unexpected Death in Chronic Pain Patients
Severe pain, independent of medical therapy, may cause sudden, unexpected death. Cardiac arrest is the cause, and practitioners need to know how to spot a high-risk patient.
Sudden, unexpected death may occur in a severe, chronic pain patient, and the terminal event may be unrelated to medical therapeutics. Fortunately, sudden death is not as commonly observed in pain patients as in past years most likely due to better access to at least some treatment. Sudden death still occurs, however, and practitioners need to know how to spot an “at-risk” patient.
Unexpected, sudden death due to severe pain is poorly appreciated, since many observers still view severe pain as a harmless nuisance rather than a potential physiologic calamity. In many cases, just prior to death, the patient informs their family that they feel more ill than usual and seek relief in their bed or on their couch. Unfortunately, some of these patients don’t awaken. Other patients die, without warning, in their sleep or are found collapsed on the floor. Modern medicine’s aggressive toxicology and forensic procedures after death have contributed to the poor understanding of pain’s death threat. In some cases, a pain patient that was being treated appropriately with an opioid or other agent with overdose or abuse potential has suddenly and unexpectedly died. Drugs were found in body fluids after death, and in my opinion a coroner wrongly declared the death to be an “accidental overdose” or “toxic reaction” to drugs rather than implicate the real culprit, which may have been an “out-of-control” pain flare.
This article is partially intended to call attention to the fact that the mere finding of abusable drugs at autopsy doesn’t necessarily mean that the drugs caused the death. In fact, the drugs may have postponed death. Some physicians have been falsely accused of causing deaths due to drug overtreatment when, in fact, undertreatment of pain may have caused the death. Additionally, opioid blood levels assessed at autopsy of a patient who died suddenly are all too often wrongfully considered accidental overdoses because the pathologist is unaware that chronic pain patients on a stable dose of opioids can be fully functional with serum levels of their prescribed opioids that far exceed lethal levels in opioid-naïve patients.1
Given here are the mechanisms of sudden, unexpected death in pain patients and some protective measures that practitioners must take to keep from being falsely accused of causing a sudden, unexpected death. More importantly, given here are some clinical tips to help identify the chronic pain patient who is at high risk of sudden, unexpected death so that more aggressive pain treatment can be rendered.
A Brief Anecdotal History
As a senior medical student at Kansas University in the early 1960s, I was required to take a rural preceptorship with a country doctor. In making our rounds one day to the county’s nursing home, I heard a farmer’s wife declare, “pain killed my mother last night.” Since then, I’ve repeatedly heard that pain killed a loved one. Folklore frequently mentions that people die “from,” as well as “in” pain. There is, however, little written detail of these events.
In the early years of my pain practice, which I began in 1975, I had several patients die suddenly and unexpectedly. This rarely happens to me today as I’ve learned to “expect the unexpected” and to identify which patients are at high risk of sudden death. In recent years, I’ve reviewed a number of litigation and malpractice cases of sudden, unexpected death in chronic pain patients. In some of these cases, physicians were accused of over- or misprescribing and causing a sudden, unexpected death, even though the patient had taken stabilized dosages of opioids and other drugs for extended periods. Also, the autopsy showed no evidence of pulmonary edema (a defining sign for overdose and respiratory depression). In cases where the physician was falsely accused, the post-death finding of abusable drugs in body fluids caused a family member, regulatory agency, or public attorney to falsely bring charges against a physician.
Setting and Cause
Unexpected deaths in chronic pain patients usually occur at home. Sometimes the death is in a hospital or detoxification center. The history of these patients is rather typical. Most are too ill to leave home and spend a lot of time in bed or on a couch. Death often occurs during sleep or when the patient gets up to go to the toilet. In some cases, the family reports the patient spent an extraordinary amount of time on the toilet just prior to collapse and death. Sudden and unexpected death, however, can occur anywhere at any time, as pain patients who have died unexpectedly and suddenly have been found at work or in a car.
Coronary spasm and/or cardiac arrhythmia leading to cardiac arrest or asystole is the apparent cause of death in the majority of these cases, since no consistent gross pathology has been found at autopsy.2-5 Instant cardiac arrest appears to account for sudden collapse or death during sleep. Perhaps constipation and straining to pass stool may be cardiac strain factors as some pain patients die during defecation. Acute sepsis due to adrenal failure and immune suppression may account for some sudden deaths.
Two Mechanisms of Cardiac Death
Severe pain is a horrific stress.6,7 Severe pain flares, acute or chronic, cause the hypothalamic-pituitary-adrenal axis to produce glucocorticoids (cortisol, pregnenolone) and catecholamines (adrenalin and noradrenalin) in an effort to biologically contain the stress.8,9 Catecholamines have a direct, potent stimulation effect on the cardiovascular system and severe tachycardia and hypertension result.10 Pulse rates may commonly rise to more than 100 beats per minute and even rise to more than 130 beats per minute. Blood pressure may reach more than 200 mmHg systolic and more than 120 mmHg diastolic. In addition to adrenal catecholamine release, pain flares cause overactivity of the autonomic, sympathetic nervous system, which add additional stimulation to catecholamine-induced tachycardia and hypertension. Physical signs of autonomic, sympathetic overactivity, in addition to tachycardia and hypertension, may include mydriasis (dilated pupil), sweating, vasoconstriction with cold extremities, hyperreflexia, hyperthermia, nausea, diarrhea, and vomiting.
The combined physiologic effects of excessive catecholamine release and autonomic, sympathetic discharge may put such strain on the heart to cause coronary spasm, cardiac arrhythmia, and sudden death.11 Pain patients who have underlying arteriosclerosis or other cardiac disease are at higher risk of sudden death. For example, a patient with angina or generalized arteriosclerosis is at high risk, and should be aggressively treated. Anecdotal reports have been made in which a patient whose pain was well controlled on opioids died unexpectedly with an underlying cardiac disease. In one report, a 40-year-old pain patient on opioids was found dead and the autopsy revealed previously unrecognized coronary artery disease, which was determined to be the cause of death. Some patient deaths may be due to other comorbid conditions, whether known or not known, and may not be related to the pain problem.
Case Example #1
A 60-year-old male with severe pain due to Lyme’s disease–related arthritis has generalized arteriosclerosis. When his pain flares, he has hypertension, tachycardia more than 100 beats per minute, and angina. On numerous occasions, he had been hospitalized for chest pain and he regularly requires nitrates for emergency coronary relief. He was treated with a long-acting opioid for baseline pain and a short-acting opioid for breakthrough pain. This regimen has controlled his angina and has prevented hospitalizations for more than 2 years.
The second mechanism, which may produce sudden death, is adrenal insufficiency. The hypothalamic-pituitary-adrenal axis may acutely and suddenly deplete during episodes of severe pain resulting in a life-threatening drop in cortisol, aldosterone, and possibly other adrenal hormones (Figure 1).12 With a precipitous drop in adrenal hormone production, there can be a severe electrolyte imbalance (eg, low sodium, high potassium), which may produce cardiac arrhythmia and death. Although undocumented, some sudden deaths may likely be a simultaneous result of excess sympathetic stimulation and electrolyte imbalance.
Identification of the At-risk Patient
An active, ambulatory pain patient who has mild to moderate, intermittent pain is not at high risk for sudden death. The patient at high risk for sudden death is a severe pain patient who is functionally impaired and has to take a variety of treatment agents, including opioids and neuropathic drugs, to control pain. In all likelihood, the patient who has centralized pain and who has central nervous system inflammation due to glial cell activation is the patient who will likely have flares severe enough to affect the endocrine and cardiovascular systems. Acute pain severe enough to cause cardiac overstimulation and death is usually only seen with severe trauma. Pain as a result of modern-day surgery is well controlled by analgesics, so perioperative sudden death due to surgically induced pain, per se, is essentially a thing of the past. Accidents, trauma, and war wounds are exceptions. In these situations, a patient in excruciating pain who shows signs of excess sympathetic discharge needs progressive emergency pain treatment to control excess sympathetic discharge.13,14 Excess sympathetic discharge signs that can be discerned at the bedside, emergency room, or accident site include mydriasis, diaphoresis, hyperthermia, tachycardia, hypertension, and hyperreflexia.15,16
The chronic pain patient who is at high risk for sudden death can usually be spotted at a clinical visit (Table 1). Patient and family will give a history of functional impairment. The most typical history will be one in which the patient will have constant, daily pain intermixed with severe flares, which cause a bed or couch-bound state. Even though medication dosages may be high, they may not be effective enough to prevent pain flares and sudden death. The patient will likely demonstrate excess sympathetic discharge. By history, this includes waves or episodes of allodynia, hot and cold flashes, hyperalgesia, and severe insomnia. Physical exam may reveal excess sympathetic discharge by any or all of the following signs: tachycardia, hypertension, vasoconstriction (cold hands/feet), mydriasis (dilated pupil), and hyperreflexia.
Cortisol, pregnenolone, or corticotropin (adrenocorticotropic hormone) serum levels may be subnormal indicating that the immune and healing systems are impaired, leaving the patient subject to infections and interference with opioid effectiveness.
When high-risk indicators are found, therapeutic adjustments in type, quantity, and quality of pain treatment must be implemented to minimize or eliminate risk factors. In particular, there should be attempts to normalize hypertension, tachycardia, and hormone levels.
Methadone Administration And Sudden Death
Other than overdose and respiratory depression, the opioid methadone has been associated with a cardiac conduction defect (prolonged QT interval) called “torsades de pointes,” which may cause an unexpected, sudden death.17,18This defect may cause sudden death by cardiac arrests. No other opioid has been credibly associated with cardiac conduction defects. In addition to the problem of QT prolongation, many methadone-related deaths occur during the first few days of use, making the deaths in these instances more likely due to the prescriber’s unawareness of methadone’s long half-life and, therefore, accumulation in the bloodstream because the dose was titrated too quickly.
However, the recognition of QT prolongation has caused considerable controversy and many experts believe that an electrocardiogram should be done to screen for a prolonged QT interval before and/or during methadone administration.17 The occurrence of “torsades de pointes” with methadone is usually dose related and associated with concomitant use of antidepressants or benzodiazepines. If a patient who takes methadone suddenly dies due to cardiac arrhythmia, there will be no gross pathology at autopsy, which is typical of sudden death in a pain patient. The prescribing physician may, however, be accused of overprescribing methadone. Due to this risk, many physicians have made a choice to shun methadone and avoid the risk of being falsely accused for overprescribing. From a clinical perspective, the use of antidepressants and benzodiazepines should be restricted if methadone is prescribed, since these ancillary agents appear to facilitate methadone deaths.
Risk of Sepsis
Although not well documented, acute sepsis and sudden death probably occur in some severe, chronic pain patients. The mechanism is probably initiated by subnormal serum levels of cortisol or other hormones due to adrenal depletion. Chronic subnormal adrenal hormone levels severely compromise the protective immune system in the body, rendering the patient susceptible to virulent bacteria and other pathogens.19,20 The author has frequently found extremely low levels of cortisol (fewer than 1.0 mg/dL) in undertreated intractable pain patients. One can only wonder as to how many pain patients have suddenly died from acute sepsis. Although documentation of this pathologic event is scant, practitioners should be aware that extremely low serum levels of adrenal hormones are known to be associated with a compromised immune system and sepsis.
Death Following Sudden Opioid Cessation
There is the misguided notion among some addiction and mental health practitioners that withdrawal from opioids is an innocuous procedure that is risk free. This school of thought says that only withdrawal from alcohol and benzodiazepines is risky. This is generally true unless the patient who is dependent upon opioids has severe underlying pain and is taking opioids solely for pain control. In some patients, opioids may mask underlying pain so well that a practitioner may not even believe that pain recrudescence is a possibility once opioids are stopped.
Patients who have severe pain that is well controlled by opioids may be sudden-death candidates if their opioids are precipitously stopped. If opioids in a severe pain patient are precipitously stopped, the masked pain may flare causing severe autonomic, sympathetic discharge and overstimulation of the adrenals to produce excess catecholamines with subsequent cardiac arrhythmia and arrest. Malpractice suits have occurred when opioids have been precipitously stopped in a pain patient. Here are two examples known to the author.
Case Example #1
A 45-year-old woman with fibromyalgia and severe pain was well controlled with extended release morphine for baseline pain and short-acting hydrocodone for breakthrough pain. She entered an in-patient detoxification program where she was told that fibromyalgia only required psychotherapy and no opioids. The detoxification program precipitously stopped all her opioids and placed her in isolation for punishment because she was using opioids as a “crutch” rather than “facing her problems.” She died suddenly about 36 hours after all opioids were stopped.
Case Example #2
A 42-year-old male had a work injury and subsequently suffered reflex sympathetic dystrophy (RSD) or complex regional pain syndrome (CRPS). His pain was reasonably well controlled with fentanyl transdermal patches (Duragesic) for baseline pain and short-acting oxycodone (OxyContin) for breakthrough pain. His workers’ compensation carrier had him evaluated by “experts” who claimed that pain couldn’t possibly exist for more than about 6 months after injury, and RSD and CRPS were not “legitimate diagnoses.” His workers’ compensation carrier, based on their “experts’” opinions, precipitously stopped all his opioids by refusing to pay for them. The man died suddenly 4 days after abrupt cessation of his opioids.
Value of Opioid Serum Levels
Patients who have severe chronic pain, take opioids, and demonstrate some high-risk signs and symptoms for sudden death as described above should have opioid blood levels done. Why? Legal protection. If a severe chronic pain patient who takes opioids suddenly dies, the practitioner may be accused of overprescribing and causing an overdose death unless he/she has pre-death opioid blood levels on the patient’s chart. Keep in mind that there will be no gross cardiac pathology at autopsy if the patient suddenly dies of a cardiac arrhythmia or arrest. And, the coroner will likely call the death a drug overdose and blame the prescribing physician. Here are two illustrative cases.
Case Example #1
A 28-year-old male, former football player had severe spine and knee degeneration. He died in his sleep and his death was brought under investigation by the coroner. At autopsy he had a methadone blood level of 400 ng/mL. The prescribing physician was about to be charged with negligence by the local district attorney, until the physician showed that, in life, the patient’s methadone blood levels ran between 500 to 650 ng/mL.
Case Example #2
A 58-year-old female with genetic porphyria had suffered from severe generalized pain for more than 20 years. She collapsed in her living room in sudden death. At autopsy she was found to be wearing three fentanyl dermal patches (100 mcg/hour). At autopsy she demonstrated a fentanyl blood level of 10 ng/mL and a morphine blood level of 150 ng/mL. Her prescribing physician was able to show the sheriff’s investigators that in pre-death treatment, she had fentanyl and morphine blood levels considerably above these found at autopsy. No charges were ever brought against the physician.
Although sudden, unexpected death in chronic pain patients appears to be declining in incidence due to greater access to treatment, practitioners need to be aware that sudden, unexpected death may occur independent of opioid administration. The precise mechanism of death is cardiac arrest or asystole due to coronary spasm, arrhythmia, and/or electrolyte imbalance. Severe chronic pain produces excess sympathetic discharge through the autonomic nervous system and overstimulation of the hypothalamic-pituitary-adrenal axis, which causes great output of adrenal catecholamines. The chronic pain patient who is at highest risk for sudden death is the patient whose uncontrolled pain and pain flares are so great as to cause a high degree of functional disability. Those pain patients who are ambulatory and active are not at high risk for sudden death. The attainment of opioid blood levels during treatment of patients who are at high risk for sudden death are advised as a medical-legal protection should opioids be present in blood after death. Patients who are identified as high risk should be monitored by regular clinic visits, and efforts should be done to control excess sympathetic discharge and adrenal deficiencies.
View Sources Last updated on: September 25, 2012