The Empowered Patient’s Guide to Fibromyalgia

Tell me all I need to know about causes, symptoms, and treatments for fibromyalgia syndrome.

If chronic conditions had passports, fibromyalgia would have the most stamps. It travels all over the place, spreading fatigue, brain fog, and pain everywhere in the body. And worse yet, some might accuse that passport of being fake. The syndrome is difficult to diagnose, has long been misunderstood, and in some cases, dismissed as a bogus condition. But fibromyalgia is very real, and just like any chronic disorder, some days will be better than others.

People with fibromyalgia experience widespread pain that may rise and fall, but remains chronic. They may also have trouble sleeping, which makes it hard to stay active, work, and keep one’s mental health in check. A diagnosis is usually made by clinical observation after ruling out other disorders. There is no cure for fibromyalgia, but recent advances in medications and lifestyle approaches can greatly improve a person’s quality of life while living with the condition.

 

THE BASICS

Fibromyalgia (FM) is one of the most common chronic pain disorders, affecting an estimated 10 million people in the US, and an estimated 3 to 6% of the world’s population. FM affects women at higher rates than men, but men also suffer from the condition. A diagnosis is usually made between the ages of 20 to 50 years, but the incidence rises with age so that by age 80, approximately 8% of adults meet the American College of Rheumatology classification of having fibromyalgia.

Fibromyalgia Symptoms and What It Feels Like2-3

People most often describe fibromyalgia pain sensations as:

  • an ache
  • a burning sensation
  • a sharp, stabbing pain

Additional symptoms may include:

  • fatigue
  • poor sleep quality that leaves you feeling tired (many report difficulty getting out of bed in the morning)
  • cognitive problems (brain fog, sometimes referred to as fibro fog) that can affect your memory, concentration, and mood
  • secondary headaches
  • dizziness
  • feeling too hot or too cold
  • tingling, numbness, burning, or prickling sensations in the hands and feet
  • restless leg syndrome
  • painful periods
  • anxiety
  • depression

Those with central sensitization may experience additional problems related to hormone balance, sleep, and autonomic nervous system dysfunction (eg, feeling dizzy, unbalanced).

Causes Behind Fibromyalgia and its Amplified Pain

Unfortunately, the exact mechanisms of FM are not fully understood, but like many chronic pain disorders, the medical community believes the brain and its perception of pain are involved.  

Mixed-up signaling in the peripheral nervous system – those are the nerves beyond the spinal cord that control sensation and movement ­– can transmit higher than normal pain sensations to the central nervous system (your spinal cord nerves) and brain. This amplification of pain is called hyperalgesia and FM is often considered a Central Pain Amplification Disorder or a Central Sensitization Disorder.4-6

As an example: a person without fibromyalgia may experience quantify bumping into a table as a Level 2 on a 0 to 10 pain scale while a person with fibromyalgia may rate that the bump as a Level 8.

The body’s internal miscommunication around pain – and how much pain there actually is – can happen for a number of reasons. Researchers have found that there is a change in the way the body of a person with FM communicates with the brain and the spinal cord.

Some experts believe there is a genetic component to fibromyalgia that is usually triggered by a stressful event that is both physical and emotional, such as childhood abuse or other trauma. In fact, there are strong correlations between fibromyalgia and post-traumatic stress disorder (PTSD). In one study of 395 patients with FM, 45.3% had PTSD and 66.5% developed fibromyalgia after the onset of PTSD.7,8

(Editor’s Note: You have the right to ask for trauma-informed care at any healthcare setting, such as requesting a clinician of the same gender, asking for a chaperone to be in the room during an exam, asking the doctor to guide you step by step through a physical exam so there are no surprises, and more.)

 

BUT WAIT, FIBROMYALGIA GETS MORE COMPLICATED

Since fibromyalgia is not well understood, it tends to be categorized in different ways. To start, it is considered a primary pain condition– meaning the pain experienced with fibromyalgia is categorized as a disease itself (whereas secondary pain refers to pain as a symptom of an underlying disease).9 As noted above, FM is also considered a Central Pain Amplification Disorder. This type of amplification has led to the classification of FM as a neurological disorder – yet, because many people with fibromyalgia experience widespread pain, they tend to see a rheumatologist, not a neurologist, for their initial diagnosis (more on this below) as well as a pain specialist. Newer clinical perspectives point to FM as a neuropathic disorder.

To make matters more complicated, there is no consensus on whether FM is an inflammatory condition even though it is often associated with rheumatic diseases, which are defined as such.This means making lifestyle changes to help with fibromyalgia symptoms – such as switching to an anti-inflammatory diet – may, or may not, help. Researchers continue to look into the potential role of inflammation, as well as the role of the peripheral nervous system, in FM's development.10

Getting a Proper Diagnosis

Getting an accurate diagnosis can be a lengthy process. Fibromyalgia is often considered to be under-diagnosed and under-treated. One recent study found that physicians miss a fibromyalgia diagnosis in nearly 50% of patients!10

So, if you have been experiencing symptoms like those described above and have sought medical help without answers, it may be time to visit a specialist.

Although fibromyalgia does not cause joint inflammation or swelling, it can cause pain and fatigue similar to arthritis. A rheumatologist – who specializes in different types of arthritis and autoimmune conditions – can help you rule out other diseases that may seem similar, such as rheumatoid arthritis, hypothyroidism, Lyme disease, and scleroderma. 

Practitioners used to rely on a “tender point” system to diagnose fibromyalgia, but the American College of Rheumatology (ACR) has recently updated its criteria for making a diagnosis. The tender point system measured a person’s experience of pain when firm pressure was applied to certain points on the body. But since the pain experience for people with FM does not always remain constant – and because everyone experiences pain differently – this process was often inaccurate and precluded many people from getting the help they need.

Current ACR guidelines focus on a constellation of symptoms to diagnose FM, along with ruling out other possible ailments (called a diagnosis of exclusion). These new criteria include:

  1. widespread pain lasting at least 3 months
  2. the presence of other symptoms, such as fatigue, waking up tired, and/or cognitive (memory or thought) problems
  3. having no other health problem that would explain the symptoms.

Once diagnosed, a pain specialist who deals with fibromyalgia can help you to manage related pain and symptoms.

 

WHAT ELSE TO EXPECT WITH FIBROMYALGIA

Sleep Disturbance

Poor sleep quality (think middle-of-the-night wakeups, and trouble falling or staying asleep) is a major issue in people with FM, but it is a bit of a chicken and egg situation – scientists aren’t sure which causes which.

One potential reason is that disturbed sleep can impair the descending pain-inhibition pathways – these pathways play an important role your body’s ability to modulate and mediate pain. Sleep studies have shown that some patients with fibromyalgia experience reduced short-wave sleep, which is suggestive of wakefulness during non-REM sleep.

What we do know is that poor sleep quality and fibromyalgia exacerbate each other. An estimated 90% of people with fibromyalgia experience disordered sleep, which then leads to daytime fatigue. Sleep deprivation has also been shown to increase the symptoms of fibromyalgia and may also be a risk factor for the development of FM. It’s a seemingly endless cycle.11 (See ways to combat the cycle below.)

Other FM Symptoms & Overlapping Disorders

People with fibromyalgia may also experience overlapping conditions, known as comorbidities, such as:

IBS is the most common overlapping condition, with estimates of its prevalence in those with fibromyalgia ranging from 30 to 35% to as high as 70%.12  In a North American database of 6,000 patients, FM was identified in 21% of people who had  rheumatoid arthritis, 37% of people with Lupus, and 17% of people with osteoarthritis. Ankylosing Spondylitis, a type of inflammatory arthritis that affects the spine, has been noted to occur at an incidence of anywhere from 4% to 25% in those with fibromyalgia.13

HOW TO TREAT FIBROMYALGIA

The medical community has made some promising advances on how to manage quality of life with fibromyalgia. Since there is no direct cure, treatment focuses on alleviating symptoms and keeping people active.

Multidisciplinary care is key. Because fibromyalgia is multifactorial – meaning there are many potential causes and a wide range of symptoms—seeing a variety of specialists will get you the most well-rounded care. You can have a general practitioner that you trust at the core of managing your condition, but it is also important to regularly see specialists, including a rheumatologist, a neurologist, a pain specialist, and a psychologist.

The most successful treatment interventions combine lifestyle modifications with medications. You may hear doctors use the term “biopsychosocial approach” – this kind of integrative care has been shown to successfully address the biological, psychological, and socioeconomic components of the pain experience.5 (More on what the biopsychosocial approach entails.)

For example, a fibromyalgia 360-care plan may include the following.

Exercise & Movement

While moving may seem daunting when you are experiencing pain and fatigue, numerous studies have shown the efficacy of exercise for the management of symptoms associated with fibromyalgia. Resistance (or strength) training seems to be the most beneficial. Need more convincing?

In one study, people who strength trained consistently for a 12-week period reported a decrease in pain and tenderness, along with a decrease in feelings of depression. There was also an overall improvement in well-being.14 Moderate aerobic activity in particular seemed to result in an overall improvement in well-being, however there was no reported decrease in pain sensations.

Meditative movement practices such as yoga and tai chi have been shown to help reduce fibromyalgia symptoms.

Exercise can also help with the sleep disturbance that accompanies fibromyalgia.

Diet & Nutrition

There is no single best fibromyalgia diet. Nutritional therapy isn’t always an exact science, and the important thing will be to find a dietary pattern that works best for you.

Your doctor may recommend an elimination diet to help discover any foods that increase your symptoms. Some small studies have shown that people with FM have an adverse reaction to:15

  • caffeine
  • dairy
  • foods sweetened with aspartame
  • msg

A healthy whole foods diet can go a long way toward increasing your energy levels and decreasing any feelings of anxiety and depression. Some foods to consider adding to your plate:

  • a variety of fruits and vegetables– to ensure you get a broad range of nutrients and plenty of antioxidants
  • foods rich in vitamin D, like fatty fishes and egg yolks– to help regulate your body’s immune response and reduce pain. Along with diet, the best source of vitamin D is sunlight.

While the benefits of an anti-inflammatory diet are slim, one diet that has shown promising results is the low FODMAP diet, which is often recommended for people with IBS.16 This plan revolves around oligosaccharides (eg, wheats, legumes, lentils), disaccharides (certain lactose products); monosaccharides (fructose, agave, honey); and polyols (fruits with pits and seeds).

Restful Sleep

You need both sleep quality and sleep quantity to get through FM days. These daytime behaviors can help you get through the night:17

  • avoid or limit caffeine intake
  • avoid or limit alcohol
  • engage in regular exercise
  • spend time outdoors, as natural light is an important part of health circadian rhythms
  • wake up at the same time every day to help maintain healthy circadian rhythms

These nighttime behaviors can also improve your sleep quality:18

Make sure you are sleepy, and not just physically tired, before you hit the sack. If you are tired but your mind feels busy, try writing your thoughts down before bed.

Create a comfortable sleep environment that is cool, dark, and quiet—this includes putting away all electronics an hour before crawling under the covers

Avoid eating too much or too little before bed. Being hungry or stuffed can wake you up.

Stress Management

Stress is a part of daily life but it is important to recognize that too much stress can actually worsen fibromyalgia symptoms. Finding practices to cope with stress (including the stress of FM itself) must be part of your self-care. In addition to seeing a psychologist or counselor, you can learn to practice certain strategies on your own, such as home-based Cognitive Behavioral Therapy (CBT). CBT has been shown to be effective in alleviating symptoms of fibromyalgia and can increase overall feelings of well-being. You might also consider meditation or our step-by-step guide to relaxation exercises.

Working directly with a psychologist will help you target the best strategy.

Alternative & Complementary Therapies

Incorporating one or more of the following into your care plan can help keep FM flares at bay. Bonus: they can also reduce stress.

  • Acupuncture/Acupressure is an age-old Chinese practice based on inserting very fine needles through the skin to various depths, causing changes to blood flow and to levels of neurotransmitters in the brain and spinal cord. Acupressure focuses on massaging pressure points throughout the body to achieve the same effect. Some studies indicate that acupuncture helps relieve fibromyalgia symptoms, while others show no benefit, according to the Mayo Clinic19 – the only way to know if it will help you is to try it.
  • Balneotherapy is the practice of bathing to treat an illness – yes, we’re talking about sitting in a bath here. But studies show it appears to reduce pain and stiffness associated with fibromyalgia.
  • Biofeedback is a process of gaining greater awareness and control of bodily functions and can help some people to manage the symptoms of fibromyalgia.
  • CBD – the non-psychogenic cannabinoid from marijuana and hemp plants may act as an analgesic in people with fibromyalgia. It may also help to relieve symptoms such as insomnia, and anxiety.20
  • Massage Therapy that targets myofascial release can move and stretch your sore muscles and soft tissues. This type of therapy can also reduce your heart rate and enable you to relax not only your mind but also any tense muscles. The result:  increased range of motion, less stress and anxiety, and a spike in the body’s “natural painkillers.”
  • Meditation/Relaxation Therapy such as mindfulness-based stress reduction can help you to cultivate “present moment awareness” which reduces stress  and has been shown to significantly improve symptoms of fibromyalgia, according to the American College of Rheumatology.
  • Mental and Emotional Therapy (see more on this below.)

Medications

There are a variety of medications that can focus on reducing symptoms associated with fibromyalgia. Finding the right regimen will take time and will likely need to be adjusted down the road if certain drugs stop working or if you develop new symptoms.

Typical medications used to manage fibromyalgia include:

  • Anticonvulsants (eg, Lyrica) which have been shown to reduce the sensation of pain in some people.
  • Muscle relaxants are sometimes prescribed to treat muscle spasms and stiffness. These drugs may also help with sleep.
  • Antidepressants (eg, Cymbalta and Savella) which boost certain chemicals (neurotransmitters) that carry messages to and from the brain. (Low levels of neurotransmitters may be a factor in fibromyalgia and it is believed that increasing their levels may decrease the pain associated with fibromyalgia.) Prampipexole is not an antidepressant but also increases levels of neurotransmitters. Amitriptyline is an antidepressant and nerve pain medication.
  • Sleep medications may be prescribed if you are really struggling with wake-ups or insomnia.
  • Medical marijuana has been indicated as an effective treatment for widespread chronic pain, such as that experienced with fibromyalgia. The THC is marijuana may modulate the perception of pain by engaging with receptors in our central nervous system.20
  • Over-the-counter generic pain relievers (eg, acetaminophen, NSAIDs, or naproxen sodium) may be helpful for episodic pain flares, according to the Mayo Clinic, albeit less effective and not meant for long-term use. Therefore, they may be used as a complementary medication used sporadically when necessary.

 

WHY YOUR MENTAL HEALTH MATTERS WHEN LIVING WITH FIBROMYALGIA

The painful and sometimes debilitating symptoms of FM can make day-to-day life more complicated than usual. Add to this the lack of medical understanding about the condition, and you may feel isolated or misunderstood. In fact, for many self-labeled “fibromites,” public perception (even in the medical world) may be one of the most frustrating factors about living with the syndrome.

If you have experienced a past trauma that potentially led to your fibromyalgia, such as physical or sexual abuse, it is crucial to be screened for PTSD and to work with a therapist who can help you talk through your past, and work toward your future.

There is a high prevalence of mental health disorders in people with fibromyalgia, including:22,23

  • Anxiety (affecting 20% to 80% of people with FM)
  • Depression (affecting 13% to 64% of people with FM)
  • Borderline personality disorder
  • Obsessive-compulsive disorder
  • Post-traumatic stress disorder (PTSD, affecting 15% to 56% of people with FM).

FM has also been linked to high levels of anger, neuroticism, perfectionism, and no surprise –stress. Many people with FM may exhibit a negative self-image and a negative body image perception.

No matter the specific cause or presentation, it is often not long before fibromyalgia takes a serious mental toll and for these reasons, it’s important to make mental health part of your routine care.

SELF-CARE

One of the kindest things you can do for yourself is to track your symptoms. Tracking what works (and what doesn’t) to relieve pain and other symptom scan help to build a sustainable and repeatable plan of care.

Some things to note daily: your movement/physical activity, stressors, severity of symptoms, and your diet. This type of written record can be a powerful ally in controlling FM flares. Share it with your care team so they can identify any key changes in your disease progression and/or make medication adjustments.

WHAT CAN I DO RIGHT NOW?

1. Traveling? Get ready for a flare
Some people with fibromyalgia experience increased symptoms when sitting for long periods—such as in a car. Avoid a flare by taking regular breaks to get up and walk around. Bring comfy support pillows. Pack in a nap or a stress-reducing meditation the day before or morning of your trip.

2. Find the right type of doctor(s):
As noted, securing the right care team is a crucial step in not only getting an FM diagnosis but also for controlling all aspects of the condition, from pain flares to exhaustion. The number and type of practitioners available to you may depend on your location and insurance coverage, but if possible, try to work with a:24

  • General Practitioner
  • Rheumatologist
  • Neurologist
  • Cognitive Behavioral Therapist
  • Pain Management Specialist
  • Psychologist

You may also want to enlist the help of a physical therapist, a nutritionist, and a counselor. And if you have experienced a trauma, be sure to share it with your doctors as this will help them take additional steps to ensure you get the care you need.

3. Join a support group
Community can be a powerful factor so joining a private or public support group may do a world of good for your mental health (here’s how to find a support group). Below are a few additonal options:

 

HAVING THOSE HARD CONVERSATIONS

Until you have an official diagnosis and treatment plan, it will crucial to be persistent with your doctors. Educate yourself about your condition and care options, and ask lots of questions. Research about fibromyalgia is still new and developing and many of the recommended lifestyle interventions are based on small studies or anecdotes from the fibromyalgia community. Different therapies will work for different people, but knowing what helps you specifically may avoid a lot of trial and error.

Fibromyalgia can affect every aspect of your life. If you’ve had days, weeks, or months when you couldn’t leave your bed, you are not alone. The toll that widespread chronic pain takes on your mental well-being can also put a strain on your closest relationships so it’s important to be honest with loved ones about what you’re facing and ask for support.

Fibromyalgia can also make it difficult to work, but many people are hesitant to file for disability. However, because FM is a primary pain condition,  people diagnosed with the condition are considered eligible for disability (check with your state and provider to be sure). That said, it can be difficult to get full benefits due to lingering stigma around the condition, which is an unfortunate remnant of FM being ignored or regarded as “not real” or “all in the head.”

Fortunately, fibromyalgia is now recognized as a real health disorder. However,  it is often helpful to apply for disability benefits on the basis of fibromyalgia in conjunction with another condition, such as rheumatoid arthritis, if possible.21

FAQs

What are the first signs of fibromyalgia?

Fibromyalgia involves a web of symptoms with widespread pain being a discerning factor, but some people will notice symptoms of fatigue and memory problems before they develop such pain. Every person experiences fibromyalgia slightly differently, and what initiates the diagnosis process for one person may be entirely different than it is for another.

How does a person get fibromyalgia?

We still don’t know exactly why some people develop fibromyalgia, although there does seem to be a genetic component. Often, there is triggering stressful event such as an illness, infection, or emotional trauma (eg, prior physical or sexual abuse).

What is the best painkiller for fibromyalgia?

Unfortunately, there is no one painkiller – whether OTC or prescribed – for fibromyalgia. People tend to do best when they combine pharmaceuticals with lifestyle interventions such as exercise, acupuncture, and stress reduction.

What are the most severe symptoms of fibromyalgia?

The qualification of most severe symptoms will differ based on each person’s experience. For many, widespread pain that you cannot pinpoint is the most severe symptom and can interfere greatly with daily life. The fatigue and disturbed sleep associated with fibromyalgia may also be quite severe and disruptive. The psychological toll of fibromyalgia is well known and should be treated as part of the condition.

 

 

Updated on: 08/17/20
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