In 2014, the Centers for Disease Control estimated that nearly 1 in 50 people had some degree of fibromyalgia with this number rising as doctors gain a deeper awareness and understanding of this disorder.
For some people, this disease might just be slight discomfort, but for others, it can be completely debilitating.
In this article, we will look at not only the disease itself but the causes, criteria for diagnosis, treatments, short and long-term effects for this disease.
What is Fibromyalgia?
Fibromyalgia is a nervous condition that affects how the brain processes pain signals from the nerves. This usually means that sensations of pain are amplified or there is a constant, general pain throughout a large portion of the body. While in some cases, these pains ebb away, most cases report a constant and consistent pain.
With fibromyalgia being a disorder involving the nervous system, diagnosis and treatment can prove difficult since it relies also on the patient’s assessments and psychology for doctors to make their determinations. As well, there is still debate over what exactly comprises fibromyalgia, let alone how to treat it.
This debate even encompasses the classification of fibromyalgia. The American College of Rheumatology and the International Classification of Diseases (ICD-10) consider fibromyalgia to be a functional disease of the musculoskeletal system and connective tissue. Meanwhile, the European League Against Rheumatism classifies the disease as a neurobiological disorder.
Like many other medically unexplained syndromes, doctors are still coming to a consensus of what exactly fibromyalgia is as well as how to treat it.
While this can make diagnosis difficult, the potential to find better treatment options through the wide-ranging definitions and theories could prove beneficial.
What Are the Most Common Symptoms?
According to the Mayo Clinic, there are many wide-ranging potential symptoms of fibromyalgia. In a vast majority of cases though, widespread dull pain occurring on both sides of the body and above and below the waist is considered the basic component of the disease.
This pain needs to last at least three months before it can be diagnosed. Many cases of fibromyalgia report allodynia, or more sensitivity or pain from touching or being touched as well. Beyond that, many sufferers of fibromyalgia report fatigue, cognitive difficulties, headaches, depression, and digestive problems as well as many other symptoms.
Many of those who study the disease are not sure if these are not just caused by fibromyalgia itself. Regardless, many of these symptoms are commonly reported. Similar to multiple sclerosis, some people with fibromyalgia may have muscle spasms, limb weakness, and struggles with some motor control.
Although anxiety, depression, irritable bowel syndrome, and chronic fatigue syndrome tend to be observed frequently in fibromyalgia patients, the ICD believes that these conditions are comorbid and separate from fibromyalgia.
This comorbidity is one factor in the struggles to define fibromyalgia. Because of its similarity of symptoms, potential causes, and treatments to several other conditions, a Mayo Clinic study in 2012 estimated that up to three-quarters of all cases could be improperly diagnosed if not dismissed out of hand.
What are the Leading Causes of Fibromyalgia?
There does not appear to be one simple cause of fibromyalgia. Doctors tend to believe that there is usually a confluence of factors that lead to the disease. This is another reason why the classification of the disorder differs between different groups researching and treating fibromyalgia.
Because of the evolving understanding of the disease, fibromyalgia is becoming more widespread. This is not to say that there are more cases occurring now, but that it is more clear what exactly fibromyalgia is and consequently more people are realizing that they had symptoms all along without knowing what causes them.
There is evidence that supports a genetic link to sufferers of fibromyalgia. This link appears to be fairly loose though and appears to involve several genes, making direct inheritance less likely.
Research has also shown that polymorphisms, or mutations to the genes, which make several hormones, including serotonin and dopamine play a factor in fibromyalgia. However, these polymorphisms are not exclusive to fibromyalgia, as they tend to show up in those suffering from other diseases too.
More often, stress and other reactions to psychological stimuli appear to play a role in the development of fibromyalgia. Major depression especially appears to lead to the manifestation of fibromyalgia, likely due (in part) to issues in the creation and processing of serotonin and dopamine.
Some sufferers of Post Traumatic Stress Disorder, also report symptoms of fibromyalgia. This is especially prevalent in those who suffered physical trauma whether in combat, an accident, or physical abuse.
For this reason, there are some who study the disease, including pioneer Dr. Frederick Wolfe, who believe that the disease is more of a physical reaction to depression and stress than its own disorder.
Smoking, obesity, and general inactivity show a higher likelihood of fibromyalgia as well. But as these lifestyle factors tend to also lead to a higher likelihood of being more prone to many diseases, these links might be coincidental.
Sleep deprivation and non-celiac gluten sensitivity are other potential causes, but more research is needed. Historically, fibromyalgia is thought to be more common in females than males, but with recent changes to both the definition as well as diagnosis of the disease, that gender gap is closing.
Even so, female cases still outnumber male cases by a factor of seven to one. Similarly, while the likelihood of suffering from fibromyalgia was thought to increase exponentially with age, according to the Mayo Clinic, it appears that more cases occur at younger ages than previously thought.
What Exactly Are the People Suffering from Fibromyalgia Going Through?
While it is not completely clear what is occurring in those suffering from fibromyalgia, there are several hormones that seem to be involved and play a role in the disease. These hormones can, when under or over-produced in the body, also cause many of the disorders considered comorbid with fibromyalgia.
The most common hormone that affects those with fibromyalgia appears to be dopamine. Those who have low levels of dopamine in their bodies frequently report the symptoms of fibromyalgia. Considering its role in motor control and pain perception, it is likely that the underproduction of dopamine is a leading factor towards fibromyalgia.
Another likely component of fibromyalgia is decreased serotonin levels. Serotonin affects pain perception as well as sleep patterns, mood, and the ability to concentrate.
In spite of this, treatments for fibromyalgia that attempt to better regulate serotonin do not correspond to improving the conditions of the patient leading many to suspect that serotonin is an accompanying and not primary cause of fibromyalgia.
Recent research has potentially seen a link between fibromyalgia and hormones controlled by growth hormones. When factoring in the frequent reports of struggles to sleep and the slow healing of muscles in those suffering from fibromyalgia, there is a chance that it plays a greater role than was believed in some cases.
How is Fibromyalgia Diagnosed?
Since fibromyalgia has symptoms similar to many other diseases and its nature is still nebulous at times, it may require the consultation of several doctors and tests before a diagnosis can be confirmed.
This is why many doctors encourage you to keep thorough and detailed records of your symptoms as well as to prepare your personal and family medical history.
Taking a closer look at the diet and medicines is also helpful since some symptoms can be caused by the side effects of the consumed foods or medications. After a general physical exam, doctors then ascertain whether you have issues with sleep or depression before doing any further tests.
Recent changes in the diagnosis of fibromyalgia have focused more on personal accounts rather than a formal test. As well, most doctors will not consider testing for fibromyalgia until the pain has existed consistently for over three months. The former common test for fibromyalgia, the tender point test, involved doctors checking 18 different points on the body when firm pressure was applied.
Since fibromyalgia and several other disorders tended to involve general pain this test was potentially both misleading and redundant for fibromyalgia. With its definition to focus more on a general, dull pain, touch sensitivity was deemed unnecessary for a diagnosis in many cases.
The approach of the modern test is one that removes reliance on the tender point test and focuses more on the widespread pain index and symptom severity scale. If both of these tests give scores above specified levels and if other possible factors are eliminated, it can lead to a diagnosis of fibromyalgia.
More often, many of the tests being done on those suspected of having fibromyalgia tend to be done primarily to rule out other diseases rather than confirm fibromyalgia.
Blood tests are used to ensure that red blood cell count, thyroid function and erythrocytes levels are all where they should be as these can create symptoms similar to fibromyalgia.
What Treatments Are There for Fibromyalgia?
Because of the uncertainty of the causes of fibromyalgia and the limited success with any treatment, most of those suffering from the disease try a variety of different treatments. In addition, many also try a combination of treatments to determine a way to at least manage their pain.
Medications
There are currently two drugs on the market in the United States and Canada to manage fibromyalgia – pregabalin and duloxetine. The FDA has also approved milnacipran, but other markets have not done so at this time.
Pregabalin, marketed in the United States as Lyrica, modulates the influx of calcium, leading to better regulation of pain. Duloxetine, known as Cymbalta in the US, regulates the flow of serotonin. Milnacipran, most commonly marketed as Savella, also regulates the flow of serotonin but does not have as adverse side effects as Duloxetine.
Along with these drugs for management, many fibromyalgia sufferers are prescribed antidepressants or anti-seizure medications to help treat the disease to varying levels of success.
When the treatment is successful, the improvement often seems to be significant. However, in many cases, there was little to no noted improvement in conditions or a minimal improvement with adverse side effects. Additionally, both anti-depressants and anti-seizure drugs have been found to take several months to show any positive effects (if there are any at all), leading many doctors to lean away from prescribing them.
Some doctors also prescribe opioid painkillers, but this practice is starting to be phased out as it does not appear to sufficiently address fibromyalgia pain and tends to lead to addiction. While the European League Against Rheumatism has recommended usage of weak opioids like tramadol in the past, recent evidence has shown that these do not help with pain and offer less effective serotonin regulation than other drugs on the market.
While dopamine levels tend to be low in most fibromyalgia patients, there has been little success in treating them by increasing dopamine levels.
Compared to other dopamine-related disorders like restless leg syndrome and Parkinson’s disease, the rate of improvement through the usage of dopamine agonists is low for fibromyalgia. In light of side effects including decreased impulse control, this path of treatment is rare both in its usage and its success.
A more recent treatment has been human growth hormone or HGH. This has either been done by a treatment cycle of HGH over several months to attempt to improve the body’s regulation of the hormone, or the usage of sodium oxybate to increase production through lengthening deeper stage sleep. While studies are still preliminary, results have been encouraging.
Psychological Therapies
Psychological and physical therapies, as well as alternative medicine, have also been embraced by some to complement or replace medication. The success rate of these therapies varies. Because of the uncertain nature of the disease in general, these treatments are usually used to aid in coping with the disease if not to alleviate pain or fatigue.
Psychological treatments usually attempt to use a multifaceted approach to address the underlying factors that may cause fibromyalgia and help enable better coping with the discomfort.
Cognitive-behavioral therapy, focusing primarily on exercise and education on sleep hygiene, has helped some sufferers better manage their fibromyalgia. Therapies focusing on alleviating post-traumatic stress disorder have also made positive inroads toward the treatment of fibromyalgia.
Sleep
When it comes to managing fibromyalgia, getting enough sleep is crucial. It helps fight fatigue, which tends to be one of the symptoms of the condition. A 2017 study found that fibromyalgia pain and lack of quality sleep are directly linked.
To improve your sleep quality, try some of the following tips and tricks:
- Minimize daytime naps
- Avoid drinking alcohol or coffee at least 3 hours before going to bed
- Avoid exercising at least 2 hours before going to bed
- Avoid eating a heavy meal at least 2 hours before going to bed
- Avoid using any kind of screens or electronic devices at least 1 hour before bedtime
- Go to bed and wake up approximately at the same time every day
- Keep your bedroom quiet, dark, and cool
- Try meditating before going to bed
Cardiovascular Exercise
Improving fitness through exercise and physical therapy has been found to help in pain management, fatigue, and sleep in many patients. Cardiovascular exercise, especially swimming, walking, and cycling has been found to be very helpful as it adds to resistance training. Exercising may lead to better physical function, as well as reduced pain, fatigue, and stiffness. A 2015 study even found that a 15-week exercise program partly reversed a specific kind of brain activity that affects people with fibromyalgia when the brain is at rest.
Rest
As people suffering from fibromyalgia seem to tire faster and more easily than people who do not suffer from the condition, it is vital for patients to rest whenever necessary. As such, it is important to stick to moderate exercise and to limit other tiring activities as well.
Diet and Supplements
Following a healthy and balanced diet with limited amounts of caffeine and alcohol and no nicotine products or illegal drugs can significantly reduce stress and improve mood.
In terms of supplements, experts suggest trying the following to relieve fibromyalgia symptoms:
- Vitamin D
- Magnesium
- Soy
- S-adenosyl-L-methionine (SAMe)
- Creatine
5-hydroxytryptophan (5-HTP) is a natural amino acid, which helps the body produce serotonin and regulate mood, thus acting as a natural antidepressant. It can be taken with food or as a supplement and it may help reduce symptoms, such as pain, anxiety, morning stiffness, and fatigue.
S-Adenosyl methionine (SAMe) is a molecule that is naturally produced in your body and is also available as a dietary supplement. Evidence suggests that it may reduce certain symptoms of fibromyalgia, including morning stiffness, pain, and fatigue. However, treating fibromyalgia with SAMe may come with some side effects, such as dizziness and stomach ache.
As supplements may interact with other medications you may be taking, it is important to check with your doctor before taking them.
Managing Stress
Evidence shows that there is a significant link between stress and fibromyalgia. Stress seems to make the symptoms worse.
To reduce stress, CDC suggests trying yoga, meditation, and massages. They also suggest trying cognitive behavioral therapy, which may change the way people perceive stress and pain and thus manage their symptoms. Other tips for reducing stress include exercising, journaling, socializing with loved ones, and joining a support group for people with fibromyalgia.
According to Australian rheumatologist Dr. Daniel Lewis, meditation may change the way your brain processes pain signals and therefore reduce your fibromyalgia symptoms. In addition, meditation promotes relaxation and rest, which may help the body heal itself.
Massages may be especially effective when it comes to reducing fibromyalgia symptoms, as they promote both physical and psychological relaxation and relieve pain. A 2014 review has shown that massage therapy may lead to a significant reduction in pain, anxiety, and depression in people with fibromyalgia. A type of massage that seems particularly promising is manual lymph drainage therapy (MLDT), which helps move your lymph fluid and thus detoxify the body.
Yoga and tai chi combine slow and controlled movement with deep breathing and meditation, as such these disciplines are promising in treating fibromyalgia. However, further studies are needed.
Alternative Therapies
With the trial and error nature of the treatment of fibromyalgia, many turn to alternative medicinal approaches to supplement or replace other treatments.
One of the most common alternative therapies is the use of acupuncture, which may seem counterintuitive, considering the nature of pain sensitivity in fibromyalgia. In spite of that, some report that it does aid in pain management and sometimes even pain alleviation.
Some people also recommend the topical use of products containing capsaicin, which is the compound that makes chili peppers spicy.
According to a small study, floatation and spa therapy provide temporary fibromyalgia symptom relief. The participants have reported considerable temporary reductions in pain, muscle tension, stress, anxiety, and sadness and an increase in relaxation, energy, ease of movement, quality of sleep, and overall well-being.
Repetitive transcranial magnetic stimulation (rTMS) is a therapy that uses magnets to activate specific parts of the brain and is used for treating some forms of depression. Evidence suggests it may also be effective in treating fibromyalgia, but more research is needed.
Some people who suffer from fibromyalgia also swear by biofeedback therapy, which monitors how brain activity changes in response to specific events and situations, helps patients become more aware of what triggers their symptoms, and thus helps them control the condition.
Reiki is a therapy that involves healing through the transmission of energy. Some people who suffer from fibromyalgia find it very useful, yet there is not enough scientific evidence to support the claims.
Is Fibromyalgia Fatal?
While Fibromyalgia itself is not fatal, the complications and loss of quality of life suffered by most fibromyalgia patients can lead to worsening of other conditions and depression.
Because of this, fibromyalgia can hinder recovery or treatment of other issues, either through struggles to separate symptoms from fibromyalgia or the general increase in health care spending by fibromyalgia sufferers.
Many fibromyalgia patients have difficulty managing simple daily tasks because of their constant pain, making the thought of holding a job or even living independently a difficult proposition. In addition, the costs of treatments and tests can become a burden for most.
Fibromyalgia also carries with it the frustration of those around the sufferer. Not just because of its relative newness as a recognized disease and the limited understanding by even those who treat it, but the doubts some have because of a lack of familiarity with the disease and lack of observable physical symptoms.
A lack of an encouraging environment could make the disease, which is linked to depression and straining relationships, much worse. Even in spite of these potential difficulties, with proper treatment, fibromyalgia can be managed and the patient can even live an active and full life.
As some people who are studying the disease strongly believe that there is at least some mental or psychological component to the disease, the prospect of overcoming the disease is linked to a combination of physical and psychological treatments, which are both crucial in curing or managing the disease.
Conclusion
Fibromyalgia makes life difficult for not only those with the disease but also their loved ones and caregivers. While life can appear to be unbearable because of the constant pain, the disease in and of itself is not a death sentence.
With several different therapies and medications available, as well as continuous research, medicine is getting closer to not only a better understanding of this disorder but also to a potential cure. As experts continue to make new discoveries and as complementary therapies, such as yoga, sleep, meditation, and massages are all promising, it is important never to give up your search for relief.
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This pretty much hits the nail on the head. I was first diagnosed in 1980 when the name was fibromyacitis. Later, it became known as fibromyalgia. As a full time teacher, I had a very difficult time coping with my pain. When I tried to retire on medical disability, I was sent to a psychiatrist, who approved my long-term disability, not because of fibromyalgia, but because of PTSD! I agree that the PTSD may have initially caused the fibro, I didn’t agree with the diagnosis. However, I did take medical disability from 1999-2007, when I became old enough to officially retire.
I am lucky to have a wonderful spouse who attended all six weekly sessions on coping with fibro, offered by the local arthritis association. He was the only husband to attend all the sessions! My family still doesn’t understand my pain; they have sort of accepted the fact that sometimes I just can’t do certain things and that I need a nap every afternoon. But I don’t think they truly understand the extent of the pain I suffer. I do have the sensitive touch syndrome, which makes it difficult shaking hands and hugging. My mother, bless her 88 year old heart, still pokes me for fun. She doesn’t get it.
I am really hoping that changing my diet will be the answer to my prayers. Taking off 50 lbs. will certainly relieve the stress on my knees and reduce the IBSD that I have been plagued with for years. In fact, after only 30 days on LCHF, my IBSD has improved. I do take sleep medication and am still under the care of a psychiatrist who understands fibro and doesn’t think I’m crazy. He prescribes anti-depressants. My rheumatologist also understands fibro and prescribes NSAIDs. Contrary to what the article says, Tramadol does relieve much of my pain, as does Neproxen. When I am in severe pain, only hydrocodone will alleviate the pain, but I have to be really bad before I will take that. I have a strong aversion to addictive drugs.
I am copying this article to send to my extended family to help them better understand what I live with every day and have for over 30 years. Thank you.