Fibromyalgia is a disease often misunderstood by society. People who have fibromyalgia experience physical pain and tender points in the body, as well as psychological distress like fatigue, insomnia, anxiety and depression.
There are several dominant theories about what causes fibromyalgia. Experts have pointed to a disturbance in spinal fluid as well as a disruption in the balance of neurotransmitters. Nevertheless, both ideas classify fibromyalgia as a neurological disease.
When Was It First Recognized as A Disease?
Fibromyalgia has not always been clearly understood and took plenty of time, research, and debate before being classified the way we know it today.
20th Century Misunderstanding
At the beginning of the 20th century, healers began speaking about a disease called “fibrositis”. The medical suffix “itis” means inflammation. Doctors used this term for patients who complained of widespread and generalized pain.
The name evolved into fibromyalgia because the medical community started to believe that the pain patients referred to likely had a neurological cause and was not due to inflammation.
Over the last thirty years, medical professionals have worked towards defining diagnostic criteria for fibromyalgia.
The first criteria were put forth by the American College of Rheumatology in 1990 and focused primarily on the experience of widespread, chronic pain, as well as the number of tender points on the body that a patient identified.
This was updated in 2010 as new research came to the forefront which suggested doctors should not rely so heavily on tender points in diagnosing fibromyalgia.
The Definition of Fibromyalgia
Fibromyalgia is a chronic, painful neurologic and musculoskeletal disorder which is also sometimes referred to as fibrositis, fibromyositis or myofascial pain syndrome. Experts classify fibromyalgia as a neurological disorder because research suggests that the nervous system is involved.
Causes of Fibromygalgia: A Disrupted Pain Process
When medical professionals first started to note the similarities between individual cases of fibromyalgia, they thought that the pain might be related to a physiological abnormality in the cells of the tissues in places where a patient reported pain.
If a patient said that their arms and shoulders hurt, the practitioner might ask about injuries to the neck and shoulder, or palpate to search for swelling, lumps, bruising, or any indication that the muscles, ligaments or joints in the affected area were abnormal.
In the case of fibromyalgia patients, practitioners noted that there were no physical abnormalities. Since pain is processed in the brain, the problem was not in the tissues or cells where the pain was felt. Instead, the problem was related to the nervous system.
The body’s nervous system all connects back to the brain. In this way, the brain is the hub, or center, of the nervous system. The brain processes information and data from the nervous system.
The brain has 100 billion nerve cells in it and acts as a control center for the rest of the body. When you touch a hot burner, your nerves transmit the message of danger up through your fingers, hand, arm, spinal cord, and into the brain.
The brain will orchestrate a full body reaction, like jumping away from a hot stove. However, the nerve cells never touch each other to communicate, even in the brain.
Instead, they communicate by sending chemicals across little gaps, also called synapses. These chemicals are necessary because they convey data about pain.
If the message is skewed, the body might perceive pain even when there is no outside source of painful stimuli. A skewed message, or disruption in the way the body processes pain, is the cause of fibromyalgia.
Disease Demographics and Risk Factors
The majority of fibromyalgia patients are middle aged, although it can also affect children and people beyond middle age. Statistics show that eighty to ninety percent of fibromyalgia patients are women. Current research suggests a genetic component, although there is still a lot to learn on this front.
There have even been documented cases of fibromyalgia that were triggered by viral agents, such as lyme disease. Another suggested cause for this disease is genetics. Fibromyalgia causes may in fact vary from case to case.
Classification of Fibromyalgia
There has been a bit of disagreement among physicians and the general public when it comes to classifying and validating fibromyalgia.
Is Fibromyalgia Real? Is it a Disease?
One of the biggest misunderstandings about fibromyalgia is that it is not a real disease. It can be thought of as an imaginary ailment or “all in their head”, and thus dismissed.
So to answer the question ‘is fibromyalgia real?’, the answer is yes! Fibromyalgia is a real disease.
A disease is a state which causes “dis-ease” or discomfort in an individual. Fibromyalgia aligns with this definition. Experts also refer to fibromyalgia as a syndrome, which is a group of symptoms.
Is Fibromyalgia an Autoimmune Disease?
Though fibromyalgia has no exact etymology at this point, experts know what it is not. Fibromyalgia is not an autoimmune disease. Autoimmune diseases involve the body’s immune system and a reaction against potential threats.
Autoimmune diseases involve blood cells and lymphocyte cells. Fibromyalgia is directly related to the nervous system, nerve cells, hormones, and neurotransmitters.
Symptoms of Fibromyalgia
There are a handful of symptoms that are typical of fibromyalgia. Below, we’ve illustrated each of the major tells.
Primary Symptom: Chronic Generalized Pain
Fibromyalgia patients report a sensation of pain in their upper and lower bodies, both below the waist and above the waist.
The pain is not due to an injury, and the patient might wonder why they have it and when it will go away. It takes an average of five years for an individual with fibromyalgia to get diagnosed.
The lag in time between an onset of symptoms and a diagnosis may be because pain is subjective. One person’s report of pain is hard to measure against another. An individual who feels that they are having more pain than usual faces a challenge when it comes to quantifying their symptoms.
Fibromyalgia is a chronic disease, so if the elevated pain level goes away within three months, it most likely was not fibromyalgia. In addition to generalized, achy pain, patients report painful sensations described as burning, tingling, and tenderness.
Primary Symptom: Fibromyalgia Tender Points
Beyond the generalized pain, patients experience fibromyalgia tender points. These are places in the body with more than normal reactivity to pressure. When a clinician presses on a tender point, the patient will report abnormal pain. The tender points can move from one day to the next.
Primary Symptom: Fatigue
While pain is one of the most prominent symptoms of fibromyalgia, it is not the only one. People with this condition also suffer from extreme fatigue. They report that when they wake up in the morning, they feel unusually tired, regardless of how much sleep they got the night before.
Other symptoms may occur for an individual with fibromyalgia. The quality of the symptoms differs for each unique case. Here is a list of possible complaints:
- Females experience more than expected pain with menstruation
- Unsteady gait
- A tingling feeling in extremities
- Loss of sensation in the extremities
- Urinary frequency
- Tender points on the body, especially around the neck, shoulders, knees, and elbows
- Muscle and ligament pain
- Decreased cognitive abilities including focus and memory
- Stiff joints upon waking
- Restless leg syndrome
- Trouble sensing temperatures such as extremely hot or cold
- Post-Traumatic Stress Disorder
- Dry mouth
- Irritable Bowel Syndrome
If you suspect that you may be suffering from fibromyalgia, there are steps you can take.
Have an In-Depth Discussion
A person who suspects he or she may have fibromyalgia should consult with a doctor who has experience in this area. Some clinicians are insensitive to subjective reports of pain and do best with hard, cold facts. This kind of clinician would not be a match for a person who suspects fibromyalgia!
It might take some searching to find the right doctor. An individual who struggles with fibromyalgia symptoms will be better off speaking to a progressive, open minded and compassionate health care provider.
Remember, it was only in the last thirty years that fibromyalgia was clearly defined in the medical community. A doctor educated before this time might have an outdated view on pain.
The best practitioner to talk to will be one who is knowledgeable about fibromyalgia and takes the time to do a thorough patient interview. The practitioner should ask questions that cover medical history (both personal and family), history of the symptoms in question.
The discussion regarding symptoms should include the patient’s’ subjective reports of sleep, digestion, mood, and cognitive functioning. A doctor who is only comfortable diagnosing based on objective data (the cold, hard facts) will struggle with this kind of information!
Nonetheless, it is vital. An estimated two to four percent of the population suffers from this painful syndrome, and yet experts suggest that three out of every four people with fibromyalgia are undiagnosed.
In addition to an in-depth interview, a doctor will likely perform a physical exam and do bloodwork. Labs are drawn more to rule out other diseases than to confirm fibromyalgia.
A physical exam with a certain number of fibromyalgia tender points used to be required, but now a report of chronic pain is enough.
Lab Tests Used to Rule Out Other Diseases
The laboratory tests that a doctor will most likely use to confirm a fibromyalgia diagnosis include:
CBC (Complete Blood Count): This test measures your body’s levels of red blood cells, white blood cells, and platelets. A health care provider looks at this value to rule out anemia, infection, lupus, leukemia, and more.
The red blood cell count will be used to determine if anemia might be causing reported feelings of weakness, headaches, and fatigue. Elevated white blood cells would point to infection as reasons for a patient’s symptoms.
TSH (Thyroid Stimulating Hormone): This test rules out a thyroid disorder. Hypothyroidism manifests as tiredness, forgetfulness, and depression. These symptoms closely mimic prominent fibromyalgia symptoms. The treatment for hypothyroidism is very different from fibromyalgia treatments, so this information is crucial.
E/LFT’s (Electrolyte and Liver Function Tests): This lab work will examine the electrolyte levels in the blood, and give information about the patient’s kidney and liver function. Electrolytes like potassium and sodium play a vital role in many organs’ functioning, including the heart.
Symptoms of electrolyte imbalance could mimic fibromyalgia. This lab work will rule out electrolyte imbalance as the cause of lethargy, fatigue, and dizziness.
The electrolyte portion of this test also rules out an acid-base imbalance as a cause of symptoms, by checking the blood bicarbonate levels. The kidney and liver function test will rule out diseases such as diabetes, heart disease, and liver disease as the cause of discomfort.
ANA (Antinuclear Antibody): This test looks for a specific kind of antibody which is a part of the bodies immune system. If these antibodies are active, the body might be experiencing inflammation, which leads to muscle and joint pain as well as fatigue. Fibromyalgia patients also experience pain and fatigue which is not due to an inflammatory response.
CK (creatinine kinase): Creatinine Kinase is an enzyme found in the blood after muscle damage. Doctors can use this information to investigate whether your pain is caused by acute trauma such as a heart attack or traumatic accident.
Because a severe traumatic accident can also trigger the chronic condition of fibromyalgia, this information might not be essential on its own. Though it won’t completely solve the mystery behind a patient’s symptoms, it can be a useful clue on the path of diagnosis.
Why Get a Diagnosis?
A diagnosis is helpful because it can help to make the disease “real” to the person who is struggling with it. In some cases, people feel guilty about the pain and fatigue that they feel because they don’t know if it is medically valid or not. A diagnosis can help on this level.
Those who suffer from fibromyalgia know how frustrating it can be to deal with their symptoms. The pain, fatigue, and other symptoms can make life miserable. It can become hard to manage to maintain a job or social life. Often the sensation of fatigue gets worse with exercise and stress.
The symptoms make the possibility of living a well-rounded, active life unobtainable. At the same time, the patient cannot make others understand what they are experiencing. People might tell a fibromyalgia patient that they imagine the symptoms.
Many patients report that they are better able to manage this debilitating disease when they join a support group. Talking with other people who experience the same phenomenon goes a long way in making the pain and fatigue ‘real’.
When a patient stops doubting their own experience and recognizes that they have an actual condition, they feel validated. This sense of confirmation and acceptance often helps a patient move forward past the struggle to prove their experience and into a phase of treatment.
A support group can help a patient find strength and hope. A group of people who understand the debilitating nature of fibromyalgia can boost each other up and relieve the burden of trying to ‘prove’ anything. Groups can also share research, treatments that work, and coping mechanisms.
Is Fibromyalgia Fatal?
Although fibromyalgia is not directly fatal, it is a severe disease. There may be comorbidities (the simultaneous presence of two chronic diseases or conditions in a patient) associated with the fibromyalgia that a patient experiences. It is important to work with knowledgeable health care providers to manage specifics, as every case is different.
Fibromyalgia Treatment Options
There is no cure for fibromyalgia, but there are many treatment options. There is a great deal of ongoing research in this area. For now, the best approach seems to be an integrated approach.
Over the last thirty years, scientists have discovered methods that help a patient alleviate pain, increase energy, and improve the quality of life.
Addressing Pain Management
Pain is one of the most debilitating symptoms of fibromyalgia. Chronic pain is often misunderstood in the medical setting, and so it can be one of the most challenging symptoms to address.
A person with fibromyalgia should never feel that they must get used to the pain, or learn to live with it. People who suffer from chronic pain can feel that it is a daunting problem, nearly impossible to address. It is helpful to break the symptoms down and take it step by step.
Generalized Muscle and Ligament Pain
Alleviate fibromyalgia pain with over-the-counter medications such as acetaminophen and ibuprofen. A doctor could also recommend prescription pain medications like Tramadol, but usually not narcotics.
Migraines are a common experience for fibromyalgia patients. They may have a sudden onset and travel from one side of the head to the other. Migraines could also involve vision, and a patient might report seeing flashing lights.
A patient’s migraine might be triggered by psychological or environmental acute stressors, such as an intense argument or particular smell, or PTSD. Medications can soothe migraine symptoms, as can lie down in a dark, quiet and calming environment.
If a pattern develops regarding migraine onset, it could be helpful to schedule around migraines. A patient should plan to have important meetings or stimulating events at times of the day when migraines do not tend to happen. Stress not only pertains to negative events; even enjoyable but overly stimulating events can trigger migraines.
Loud noises, or bright lights can lead to a headache. Strong smells such as chemicals and perfumes also tend to trigger painful fibromyalgia migraines. A patient can manage this facet by avoiding places with chemically toxic fumes, such as industrial areas with lots of paints, stains or cleaning chemicals.
One technique for avoiding strong smells is to politely ask those in your vicinity to abstain from wearing strongly scented perfumes and lotion. Anyone can place a simple sign in gym locker rooms, work areas, and classrooms to spread this message.
A thoughtful conversation can make all the difference. People who suffer from fibromyalgia migraines can also talk to their family members and friends about the triggers for their migraines to cut down on episodes.
Particular movements and body positions exacerbate pain for fibromyalgia patients. It is beneficial to adopt some simple strategies when it comes to body positioning.
Patients should avoid the strain of the muscles and sustained muscle contractions. For example, instead of straining back muscles by sitting on a bench without a back, a fibromyalgia patient can choose a chair with back support. This intentional positioning will allow them to release tension and will help to prevent pain.
Fatigue is a prominent symptom for individuals with fibromyalgia, and because of this proper management is key to quality of life. Extreme fatigue can cause other symptoms to occur, including the “fibro fog” of inability to focus and decreased memory functioning.
Cognitive abilities play a significant role in the quality of life. Career success, safety, happiness, and well-being all have roots in cognitive functioning. With fatigue, it becomes hard to maintain cognitive functioning, and patients start to experience a loss of quality of life.
What Researchers Have Uncovered Regarding Fatigue Management
An individual can manage this problem by focusing on sleeping patterns. A great deal of research has been conducted regarding fibromyalgia and sleep. Researchers debate whether the fatigue that comes with fibromyalgia is a symptom of the disease or a cause of it. Either way, sleeping patterns are deeply affected.
A healthy body enters into a REM cycle several times per night. REM sleep, or “Rapid Eye Movement” sleep, helps the body and mind rest and heal. Without REM sleep, a person does not get the same benefits out of sleep. Many fibromyalgia patients do not enter REM sleep cycle.
Figuring Out Specific Causes
To improve sleep patterns, a patient can get sleep tests done by a specialist. Sleep studies and tests will provide information about what exactly is causing the sleep pattern disturbance. Is it restless leg syndrome? Neurally mediated sleep apnea? Is the sleep disorder related to movement due to discomfort? What is the relationship between pain and sleep?
Sleep study diagnostics will direct the course of treatment. Treatment options include CPAP machines, prescription medication, herbal medication, and adopting best practices for sleep routines.
For sleep apnea, a patient will need to consider wearing a CPAP machine, which directs oxygen at a positive pressure into the patient’s nose and mouth while sleeping. This steady oxygenation allows the body to enter deeper sleep instead of waking due to oxygen deprivation.
Restless leg syndrome can be managed with prescription medication or herbal supplements. Doctors and naturopaths can help a patient find the right medication to help their muscles relax and to prevent spasms. This treatment will contribute to better sleep throughout the night.
If the sleep pattern is not disturbed because of sleep apnea or muscle spasms, the patient can work on improving sleep routines.
Best practice for sleep routines include going to bed and waking at the same times every day, not ingesting sugar or caffeine after noon, abstaining from alcohol, and not eating snacks before bed.
Fibromyalgia is a serious neurologic disease which has many implications in an individual’s life. Over the last thirty years, researchers have shed light on this condition, which was once almost entirely misunderstood. Though there is no cure, there are many treatment options. Restoring and rebuilding the quality of life is the goal of treatment.