Fibromyalgia is a chronic pain condition believed to strike around 10 million people in the U.S. It mostly affects young to middle-aged women but can occur at any age and is found in men as well.
Called the quintessential pain syndrome fibromyalgia is characterized by widespread pain, fatigue, unrefreshing and poor sleep, “fibro-fog” (cognitive problems), mood issues, problems with stimuli and other symptoms.
Fibromyalgia causes so many symptoms that it might best be described as sensory disorder that encompasses many of the sensory processes in the body.
For many years fibromyalgia was thought most often to be triggered by physical trauma such as an accident, injury or infection. Recent studies suggest that most people this is not so for most people. Having any chronic pain condition, however, increases one’s risk of coming down with fibromyalgia
It’s believed that constant streams of pain signals to the brain cause changes in the nervous system which results in a state of widespread pain sensitization known as fibromyalgia.
Fibromyalgia’s core characteristic is a widespread pain that can occur in a variety of flavors. Some of the terms used to describe the various kinds of pain encountered include burning, stabbing, throbbing and aching. Allodynia – when touch becomes painful – and nerve associated pain such as numbness, tingling and burning are coommonly found. The pain is often worse in the morning and can be severe enough to significantly limit a person’s ability to work and socialize.
The widespread nature of the pain is a critical part of the diagnosis but many other symptoms are often present. They can include fatigue, post-exertional malaise, sleep problems, cognitive problems (e.g “fibrofog” – difficulty concentrating, poor short-term memory, slowed information processing, problems multi-tasking) muscle spasms, rashes, problems standing, irritable bowel symptoms, muscle weakness, myoclonic twitches, pelvic pain, poor coordination and hypoglycemia.
Because many doctors are not familiar with FM getting a diagnosis can sometimes be a drawn out and costly process. Diagnosis depends upon assessing symptoms and ruling out other diseases. (A diagnostic blood test has possibly been developed which is covered by Medicare and some insurance companies. Find more about it here.)
A controversial 2010 ACR criteria utilizes a widespread pain index (WPI – 19 areas of the body) and a symptom severity (SS) scale assessing pain and many other symptoms. According to the 2010 ACR criteria, fibromyalgia is diagnosed when
- WPI ≥ 7 and SS ≥ 5 OR WPI 3–6 and SS ≥ 9,
- Symptoms have been present at a similar level for at least three months, and
- No other diagnosable disorder otherwise explains the pain
Several conditions that mimic fibromyalgia’s symptoms can result in a misdiagnosis.
Doctors familiar with fibromyalgia, however, say the constellation of symptoms found in FM make it easily recognizable.
Fibromyalgia often causes severe distress which impedes patients ability to work, socialize, exercise as they did before. While no cures exist many people – usually using a multidimensional treatment approach – experience improvement over time and a few people do overcome it.
No evidence suggests that FM results in early death or that it resolves over time into a more serious neurological condition. Fibromyalgia can, however, cause the most severely afflicted to become housebound or even bed bound.
Fibromyalgia is probably a heterogeneous condition that can be produced in several ways. It’s clear that the activity of pain producing pathways in the brain/spinal cord is up regulated and the activity of the pain inhibiting pathways is reduced, but the cause or causes of these issues is unclear. Genetics appears to play something of a role in FM and several gene polymorphisms have been linked to FM.
Increased glutamate and reduced dopamine, serotonin and opioid signaling in the brain have been found. The sympathetic (fight or flight) and parasympathetic nervous systems (rest and digest) are effected. The involvement of the immune cells in the brain or microglial is suspected. Recent studies suggest the immune system in the body may be involved.
Fibromyalgia is best treated using a multidimensional approach that incorporates pharmaceutical drugs, supplements, alternative medicine approaches and/or behavioral approaches. Treatment is aimed at symptom management not a cure.
FDA Approved Drugs
Three drugs, Lyrica (pregbalin), Cymbalta (duloxetine) and Savella (milnacipran HCl) were approved by the FDA between 2007 and 2009 to treat fibromyalgia. While these drugs can be very helpful in some, side effects and lack of efficacy prevent many from using them.
The consensus regarding the use of opioids in FM, and indeed in chronic pain conditions in general, is that they are not particularly effective. Long term opioid use (more than a couple of months) can cause increased pain sensitization (hyperalgesia), addiction and other side effects. Many people with FM struggle, as well, with the side effects of opioids.
While opioids are not generally recommended for FM, for a subset of FM patients they provide an important means of pain relief. When opioids are used weaker opioids with low addiction potential such as tramadol (Ultram) with or without acetaminophen may be particularly helpful.
The next generation of opioid drugs being developed may provide better pain relief with fewer side effects.
Under The Radar and Alternative Medicine Treatments
Low dose naltrexone and medical marijuana are two under the radar treatments that have failed to attract significant amounts of research but are often very helpful in fibromyalgia. Patient surveys put them at the top of the list regarding effectiveness. Other alternative treatments include trigger point injections, hyperbaric oxygen treatment, herbs, many kinds of supplements, dietary changes and massage, myofascial release, acupuncture, yoga and Tai Chi.
Non Pharmacological Approaches
Non-drug approaches to fibromyalgia can play an significant role in a well-balanced treatment regimen. Pacing, stress reduction, exercise and movement therapies can all be helpful.
Many people with fibromyalgia are well acquainted with the negative impacts stress can have on their pain and sleep. Several of the approaches outlined below seek to reduce pain levels by reducing the emotional and mental stresses associated with having a chronic illness. Studies suggest they are moderately successful at doing this – and as such – provide another element of an effective treatment regimen.
Cognitive behavioral therapy, Meditation, Mindfulness Based Stress Reduction (MBSR) have been studied in FM. Newer behavioral modification therapies such as the Amygdala Retraining Program, Neurolimbic Training and the Lightning Process, have not undergone clinical studies.
New and Emerging Treatments
Five drugs may be approved for use in the U.S. over the next two to five years and new approaches to treating pain are being developed. New approaches to chronic pain include transcranial magnetic stimulation, ketamine derived drugs, vagus nerve stimulation. Ion channel blockers, the next generation of opioid drugs.
- Four New Drugs for Fibromyalgia?
- Ketamine Derived Drugs
- Vagus Nerve Stimulation
- Ion Channel Blockers
- The Next Generation of Opioid Drugs
Both men and women can have fibromyalgia but it occurs most commonly in females – a finding also found in chronic fatigue syndrome, migraine, irritable bowel syndrome (IBS), interstitial cystitis (IC), temporal mandibular disorder (IBS), most autoimmune illnesses and other chronic pain conditions.
Why females are at greater risk of coming down with fibromyalgia is not clear but their complex hormonal and immune systems may play a role. Some studies suggest that testosterone plays a protective role in men.
Fibromyalgia is similar to and commonly co-occurs with other pain and fatigue causing disorders such chronic fatigue syndrome (ME/CFS), migraine, irritable bowel syndrome (IBS), interstitial cystitis (IC) and Gulf War Syndrome (GWS).
Other common co-morbid disorders include myofascial pain syndrome, restless leg syndrome, osteo and rheumatoid arthritis and lupus. Studies suggest that people with any painful condition are at increased risk of coming down with fibromyalgia at some point.
Mood Disorders and Fibromyalgia
The name fibromyalgia implies problems with the muscles and joints but until recently researchers found few problems in these areas. The inability to correlate the pain FM patients experience in a joint, for instance, with problems in that joint lead many medical professionals to take a dismissive approach to what they assumed was a psychological disorder.
Many studies now indicate fibromyalgia is primarily a central nervous system disorder caused by dysregulated pain pathways in the brain and spinal cord that cause the brain to interpret normal stimuli as pain.
All chronic illnesses are associated with increased rates of depression and anxiety but the rate of mood disorders in fibromyalgia may be higher than in most chronic illnesses.
Several factors may contribute to this including the unusually widespread problems (pain, fatigue, poor sleep, reduced cognition) the disease brings, and the poor reception many patients get at the doctors office. Another factor may be common physiological pathways fibromyalgia shares with mood disorders.
One of the more intriguing aspects of fibromyalgia are the events that trigger it. While a significant number of people fibromyalgia do not experience a triggering others do. (Recent studies suggest that most people with FM do not experience an obvious triggering event.) Stressful events ranging automobile accidents to infections to vaccinations to emotional stressors have all been known abruptly trigger fibromyalgia. Researchers have been able to trigger fibromyalgia-like conditions in laboratory by subjecting laboratory animals to prolonged and/or unexpected periods of stress.
How this abrupt shift happens is not clear but may involve immune cells in the brain and spinal cord called glia cells that may become suddenly and permanently activated. These cells then may produce inflammatory products that symptoms such as pain, fatigue, sensory, cognitive and mood problems we commonly associate with having colds.
Like other disorders that are common, cause high rates of disability and mostly affect women but which do not kill them, the main medical funder in the U.S. (and the world) – the National Institutes of Health – virtually ignores FM. The NIH provides about $1 per patient per year for FM research, making fibromyalgia amongst the poorest funded diseases of all.
What little funding the institute FM is based in (the NIMH) goes mostly to studies focusing on behavioral approaches to the disease. It shares this distinction with other diseases it co-occurs with such chronic fatigue syndrome, irritable bowel syndrome, interstitial cystitis, migraine, TMJ and other disorders.
It also shares it with chronic pain. Despite being the mostly costly condition the United States medical system encounters the NIH only began to track its pain expenditures in 2014. An 2012 Institute of Medicine (IOM) report that highlighted the inadequacies of chronic pain treatment and research and a strategic document produced in 2015 by an association of chronic pain groups will hopefully increase the NIH’s commitment in this area.
Fibromyalgia does receive some research from pharmaceutical companies. These companies, however, are seeking mostly to build on past successes. Given the paltry attention given the disorder, treatment breakthroughs, if they come, will probably come from efforts to understand chronic pain in general. It’s hard to see where the critical research breakthroughs needed to produce better treatments for the disorder will come from.
Unfortunately the advocacy at the patient and professional level needed to propel the disease forward at the federal level is mostly lacking.