Is fibromyalgia — this simple start of a Google search term reveals people's most frequent questions about this much-discussed but little-understood functional pain disorder. Judging by the order in which the auto-fill suggestions appear, folks primarily wonder whether fibromyalgia is a "real" condition. They're also curious whether it's considered a disability, deadly, cancerous, inherited or genetic, curable, and dangerous.
Let's start off by answering those questions, then.
Fibromyalgia is as real as the widespread pain, tender points, debilitating fatigue, poor sleep quality, cognitive changes, and emotional distress people plagued by it — an estimated two percent of adults in the US, which is more than five million people — experience. Research also suggests, however, that up to three quarters of patients remain undiagnosed, which means the true prevalence of fibromyalgia could be much higher. Its cause remains unclear, and though there is no cure, fibromyalgia can be managed. Fibromyalgia isn't deadly, but if you consider the emotional and mental impact the condition can have on patients, it may just be considered dangerous. Before anyone asks, fibromyalgia is neither progressive nor contagious, and nope, it's not cancerous either. There is probably a genetic component, but it hasn't fully been explored as of yet.
Though symptoms vary in severity from one patient to another and also fluctuate over time, fibromyalgia can most certainly represent a disability. The US federal government defines a disability as "a physical or mental impairment that substantially limits one or more "major life activities," and additionally requires some proof of this, in the form of a formal diagnosis for instance.
Now that that's out of the way, what else should "everyone" — which includes people led by random curiosity, those who have a loved one diagnosed with fibromyalgia, and people who believe they may be suffering from "fibro" themselves — know about the condition?
What causes fibromyalgia?
While the root cause of fibromyalgia remains to be discovered, the currently available body of scientific literature does offer numerous insights. The most interesting of these is the revelation that fibromyalgia is "a disorder of pain processing", caused by "neurochemical imbalances in the central nervous system". This essentially means that brain changes make fibromyalgia patients hypersensitive, leading them to feel pain even in response to gentle touch. This discovery explains why people with fibromyalgia experience chronic pain, but it doesn't demystify its other symptoms yet.
Known risk factors for fibromyalgia include:
- Severe stress, both physical and mental — including viral infections, repetitive stress injuries, being in an accident, or experiencing a life event that is also likely to cause post-traumatic stress disorder, such as combat, a natural disaster, or a sexual assault.
- Being female — the majority of fibromyalgia patients are women, and most are middle aged.
- Certain other chronic conditions, particular autoimmune diseases — rheumatoid arthritis, lupus, and Temperomandibular Disorder are examples.
- Being obese.
- A family history of fibromyalgia.
Understanding the symptoms of fibromyalgia
Widespread pain, tender points, stiffness, fatigue, poor sleep quality, and cognitive changes are the main symptoms of fibromyalgia. Symptoms will vary from one patient to another, however, as well as fluctuating within the same person.
Pain and tender points
Fibromyalgia sufferers live with widespread, chronic pain, but this pain will fluctuate in severity — sometimes being so bad that you can hardly engage in normal, everyday, activities, and sometimes being quite manageable. Factors such as your stress levels, the weather, and how much you've been exerting yourself physically can all influence the amount of pain you deal with on a given day. The exact nature of the pain can also vary; aching, stabbing, and burning sensations are all possible. In addition, you may find that the pain is worse in certain areas of your body.
Though your whole body will ache to varying degrees, some spots will be special sources of agony; these are called "tender points". They're small, localized areas of the body that will cause you great discomfort when they're touched. Tender points may be present on your back, shoulders, chest, head, knees, and hips — but their number and location can easily fluctuate. Sometimes confused with "trigger points", touching which produces pain in other areas of the body, realizing that they are not the same thing is important during the diagnostic process.
Fatigue and poor sleep quality
The pain, fatigue, and poor sleep quality that are so characteristic of fibromyalgia may seem to form a kind of unholy trinity. That's to say, feeling extremely tired is pretty much to be expected if you can't seem to fall asleep or stay asleep, and both of those things are also logical results of chronic pain — pain keeps you awake. People with fibromyalgia often, however, still feel fatigued even if they've had their recommended seven to nine hours of sleep. This is called "non-restorative sleep". The causes of your fatigue may, in other words, be more complex than "pain causes poor sleep, which causes fatigue".
People with fibromyalgia often use the term "fibro fog" to describe the cognitive symptoms of the condition, which center on short-term memory issues and fatigue. These can include:
- Lack of concentration
- Finding it hard to take part in conversations
- Forgetting things
- Feeling like your brain isn't working properly — not being able to study well, for instance
The fibro fog can range from "barely there" (you might feel like most people do if they've had a couple hours less sleep than they should have) to "dominates everything". The severity of your cognitive symptoms is linked to your sleep quality, but not solely.
Whether you enter the diagnostic process already suspecting you could have fibromyalgia or with no idea what might be responsible for your symptoms, your physician is going to want to take you through a thorough set of steps. The symptoms of fibromyalgia can also be caused by numerous other conditions, and it's not uncommon for people to be facing more than one medical condition. Your doctor's task is, then, to rule a variety of options in or out. These include depression and rheumatoid arthritis.
This process may involve:
- A talk about the nature, severity, and duration of your symptoms, and about your personal and family medical history.
- Laboratory tests that look for inflammation, hormone levels, and vitamin D deficiency.
- A physical examination — your doctor may perform a "tender point test" during this exam, but they should additionally ask you what points have been sore in the past period of time.
In order to be diagnosed with fibromyalgia, you'll need to have experienced pain for at least three months (at which point the pain is considered chronic), have most of the other symptoms associated with fibromyalgia, and have tender points. Typically, fibromyalgia flare-ups occur. Your doctor also needs to be confident that your symptoms can't be explained by any other condition.
Fibromyalgia and other medical conditions — because misery loves company
It isn't rare for fibromyalgia to go hand in hand with one or more other conditions, some of which have similar risk factors — such as stress and being female. You may first be diagnosed with fibromyalgia and then develop another condition, the other way around, or go through a diagnostic process not knowing what could be plaguing you only to end up with two or more diagnoses.
Conditions you're at a higher risk of also developing when you have fibromyalgia include:
- Temperomandibular Disorder (TMD), a set of possible problems with the jaw joint and muscles that leads to jaw pain.
- Irritable bowel syndrome, a chronic disorder of the large intestine that produces abdominal cramps, diarrhea and constipation, and gas.
- Myofascial pain syndrome, a condition in which connective tissue inflammation leads to muscle pain, often caused by repetitive stress.
- Migraines or other headaches.
- Tingling sensations in the hands and feet (Raynaud's Syndrome).
- Lupus, an autoimmune disorder that can affect numerous different parts of the body, from your skin to your heart.
- Restless leg syndrome, in which sensations you experience cause you to feel the overwhelming urge to move your legs.
- Ankylosing spondylitis
- Rheumatoid arthritis
- Interstitial cystitis
What can you do to manage fibromyalgia?
Fibromyalgia treatment can consist, broadly, of four possible components — pharmacological treatment, non-pharmacological treatments suggested by your healthcare provider, alternative remedies, and lifestyle changes.
Medications your doctor may prescribe or advise include:
- Non-steroidal anti-inflammatories, like ibuprofen, naproxen, and Aspirin — these are all available over the counter, but make sure you do not exceed the recommended doses.
- Tramadol for more severe pain.
- Pregabalin (Lyrica) for nerve pain — this medication has specifically been FDA-approved to treat fibromyalgia.
- Antidepressants, commonly Duloxetine (Cymbalta) or Minacipran (Savella), not just to help you reduce feelings of depression you may have, but also to help with the pain and poor sleep quality.
Other treatments your doctor is likely to recommend are:
- Occupational and physical therapy to strengthen your muscles, increase flexibility and reduce stiffness, improve your posture, and help you find less physically taxing ways to carry out daily responsibilities.
- Talk therapy, particularly cognitive behavioral therapy, again not just to help you cope with the emotional impact of fibromyalgia, but also to teach you pain management techniques, such as deep breathing.
Therapies that fall under the complementary or alternative umbrella and may help you are:
- Nutritional supplements — many fibromyalgia sufferers have a vitamin D deficiency that needs to be remedied. Magnesium supplements may also help. Other products, like S-adenosyl-L-methionine and creatine, are also being explored.
- Alternative approaches — acupuncture, massage therapy, chiropractic care, biofeedback, meditation, and guided imagery may all also benefit some fibromyalgia patients.
With the exception of vitamin D supplementation, the evidence that these approaches work are not as strong you'd probably like, and we'd recommend you to consult with your regular doctor before trying most of these approaches, with the exception of meditation. It is well-known that stress worsens fibromyalgia symptoms while stress relief can reduce them, so anything that makes you less stressed and that doesn't hurt your body is a good thing.
Lifestyle changes you may find useful as a fibromyalgia patient include:
- Practicing good sleep hygiene in a bid to achieve better and longer sleep. This means going to bed and getting up at the same time each day, practicing a relaxing bedtime routine before hitting your pillow, and keeping electronics out of the bedroom.
- Regular, but gentle, exercise. Try swimming, aquarobics, walking, or cycling twice a week for 15-30 minutes, and consult your doctor if you are hoping to attempt a more rigorous workout program. It may be counterintuitive, but regular exercise can do a great deal to improve your symptoms if you stick with it.
- Stress reduction and relief. Eliminate stressors, which may worsen your symptoms, from your life wherever possible. Find ways to relax that work for you, whether yoga or meditation, reading, or attending concerts regularly — not everyone relaxes in the same way.
- If you suffer from "fibro fog", regular "brain teasers", like Sudoku, chess, jigsaw puzzles, or Scrabble may help.
- There is no one fibromyalgia diet, but you do benefit from healthy and balanced nutrition. Include plenty of fresh vegetables in your diet to help boost your energy, and keep a diet journal to see if any specific foods tend to worsen your symptoms; stay away from those if they do. If you are diagnosed with an additional condition, such as irritable bowel syndrome, specific diets may enter the picture.