First recognized by the American Medical Association (AMA) in 1987 as a defined disease and cause of illness and disability, roughly four million people in the United States alone suffer from this chronic condition. So what, exactly, is this invisible illness? Fibromyalgia (commonly referred to as Fibro) is a relatively small word to describe a very real, substantial medical condition.
People with the disorder have a heightened sensitivity to pain. Anyone of any age can be diagnosed with Fibromyalgia, but it tends to affect more women than men. Children are sometimes identified as having Fibromyalgia, but it is typically diagnosed between the ages of 20 and 50, and the chances of developing it increase as you age. Fibromyalgia does not discriminate. It occurs in people of all racial, ethnic, and socioeconomic backgrounds.
People with other diseases, especially rheumatic diseases, mood disorders, or other conditions causing pain, are more likely to develop Fibromyalgia. Unfortunately, because most of its symptoms are considered vague and nonspecific, many patients struggle for an average of five years (but often longer) before receiving the proper diagnosis.
Signs and Symptoms: Is It All in My Head?
Fibro is a long-lasting disorder causing pain and tenderness throughout the body, fatigue, and trouble sleeping. The symptoms must last for one year or longer. While this description sounds relatively simple, Fibromyalgia is a complicated chronic illness with numerous signs and symptoms. Listed below are only a few of Fibro’s signs and symptoms. (It is important to note that this is not an exhaustive list.)
- Widespread, varied pain
- Increased sensitivity to pain, such as an over-exaggerated response to pressure and/or other stimuli such as light, sound, and smell
- Profound fatigue interfering with most daily activities
- Sleep disturbances (such as trouble falling asleep or frequent waking) and/or insomnia
- Cognitive impairment (commonly referred to as brain fog or fibro fog) that manifests as confusion, the inability to concentrate, and/or problems with memory
- Muscle stiffness
- Frequent muscle spasms
- Weight gain
- Painful periods
- Gastrointestinal upset such as abdominal cramping, diarrhea, and/or constipation; also heartburn
- Tension headaches and/or migraines
- Irritable or overactive bladder
- Pelvic pain
- Excessive sweating and/or night sweats
- Feeling too hot or too cold
- Restless legs
- Pins and needles feeling in hands and feet
What Made Me Feel This Way?
The underlying cause of Fibromyalgia has not been identified so far. However, scientists speculate that there might be more than one reason a person develops it. Some more likely theories encompass issues with the body’s neurological system, such as a poor connection between the brain and nerve pathways or nerve inflammation, possibly in the brain but certainly in the area of the person’s pain. Also being considered are potential autoimmune causes or the metabolism of small nerve fiber cells being disturbed in some way.
Despite the currently unknown biological cause of Fibromyalgia and the competing theories regarding the condition, the medical community does agree that there seem to be some common triggers, including:
- Having a long-term virus such as Mononucleosis or Lyme disease
- Repeated or prolonged viral infections
- Physical trauma, especially of the cervical spine, from incidents such as car accidents or sports injuries
- Giving birth
- Emotional stress
- Inflammatory conditions such as autoimmune diseases or arthritis
- Hypermobility of joints and/or ligaments
- Past psychological trauma
- Lack of exercise
- Being overweight
Why Does It Take So Long to Get Answers?
It is easy to see how complicated it is for someone to receive the proper diagnosis of Fibromyalgia. While we would like to believe medicine is an exact science, the reality is that it is often a system of trial and error. Unfortunately, Fibromyalgia is a diagnosis of exclusion, meaning a patient will most likely endure many tests and procedures to rule out other causes of a person’s symptoms before a practitioner can determine with a fair amount of certainty that the cause is indeed Fibromyalgia.
Trial and error regarding so many tests and procedures is one of the biggest reasons patients wait so long before receiving an answer for why they feel the way they do. It is standard procedure to order a batch of tests, wait for the results of those tests to meet with the patient regarding the results, and, if the results are inconclusive (which is all too often the case with Fibro patients), begin the cycle again.
Treatment and Challenges: So Much More Than Medication
Contrary to popular belief regarding the chronic pain seen in Fibromyalgia, opioid pain medications are not what most practitioners would consider for first-line treatment of the condition. More often than not, they recommend a combination of medication and lifestyle modifications before prescribing opioids. A trial of antidepressants, anticonvulsants, or even trigger-point injections is initially recommended.
Along with the medications, many providers recommend getting better, more restorative sleep; regular exercises such as yoga, swimming, and stretching; adequate hydration; modified day-to-day pacing (prioritizing your daily to-do list to be more reasonable and manageable based on how you feel each day); relaxation techniques such as meditation and mindfulness; avoiding inflammatory foods (red and processed meats, refined grains, junk food, soda and other sweetened drinks, and fried foods); and mental health therapy.
Acupuncture and chiropractic care are also highly recommended, as is massage therapy to improve circulation and break down trigger points (knots you can feel in superficial skeletal muscles). In recent months, sensory deprivation, or float pools, have become popular among Fibro patients with the financial means to use them when needed. It is also important to note that the Mayo Clinic has a program specifically for Fibro patients. It incorporates many of these therapies with Cognitive Behavior Therapy to “reset” the neurological system so that it is not so hypersensitive to pain.
Unfortunately, not everyone who suffers from this life-altering condition can afford some or all of these therapies, and many health insurance policies will not assist in paying for them, which makes successful treatment incredibly challenging. Such limited treatment options often leave practitioners no choice but to rely heavily on medication to treat the symptoms and, as a last resort, opioid pain relievers.
However, there is hope on the horizon that some promising future treatments, such as using monoclonal antibodies (proteins made in a laboratory meant to stimulate your immune system) or low-dose naltrexone, may prove to be fairly low-cost cost, safe, and effective treatments, but more research is needed before the FDA will approve them for treatment of Fibromyalgia pain.
You Don’t Look Sick
One of the biggest challenges in living well with this chronic pain condition with so many other possible symptoms is finding physicians who are willing to truly listen. All too many patients with “invisible illnesses” find themselves victims of medical gaslighting or being labeled a hypochondriac. Medical gaslighting is when patients feel their complaints are dismissed, discounted, or discredited. When speaking with a medical provider, if you notice any of the following, they may be medically gaslighting you:
- The provider interrupts or does not listen
- The answers they give do not adequately address your concerns
- You feel embarrassed or ashamed after telling them your symptoms and concerns
- You leave wondering if you are imagining your health issues
- The provider blames or accuses you of causing the symptoms (Kloss, 2023).
If a provider is gaslighting you or, at the very least, not truly listening to what you are trying to convey to them, it is more than appropriate to find one who will listen and be as concerned as you are regarding your health. Always remember that despite feeling like you are constantly reporting new symptoms, you should always tell your provider(s) about any new signs or symptoms you may have noted between visits. New ailments may be nothing more than other ways Fibromyalgia is affecting you. However, they may be just as likely due to a potentially life-threatening illness or condition your provider should not ignore.
Lastly, if you or someone you are close to is living with any chronic illness or condition, it is vitally important to become familiar with the Spoon Theory. Spoon Theory is a tangible way to describe living with a fatiguing chronic illness. It helps explain your limits and boundaries regarding day-to-day activities to friends and loved ones.
According to Spoon Theory, everything a person does requires energy, and each task requires a set amount of it, to which one spoon is assigned. The energy required for a task or set of tasks varies from person to person, so determining how many spoons are available for each day is unique. For example, showering, dressing, or taking medication may use only one spoon per activity. While things like grocery shopping, going to work, or a girls’ night out may require several spoons each.
Typically, people who do not live with a disability or chronic health condition wake up with enough spoons to handle their schedule for the day. They have enough energy to care for their body, home, job (and/or school), and social plans without worrying about running out of spoons. However, people with chronic health conditions wake up with a limited number of spoons.
Simple activities such as getting ready for work or school, along with symptoms such as brain fog, pain, muscle stiffness, and headaches, use up their spoons throughout their day. When they try to use more spoons than are available, they quickly become exhausted and unable to do anything more that day. They may also pay for overusing spoons by having even worse symptoms and fewer spoons the following day (Raposo, 2022). This theory is particularly helpful when prioritizing daily, weekly, and monthly activities. If you live with a chronic disease, mental health issue, or disability, use your spoons wisely each day.
- National Institute of Arthritis and Musculoskeletal and Skin Diseases
- National Fibromyalgia Association
- National Fibromyalgia and Chronic Pain Association
- The American Fibromyalgia Syndrome Association, Inc.
- Spoon Theory
- But You Don’t Look Sick
American College of Rheumatology. (n.d.). Fibromyalgia. https://rheumatology.org/patients/fibromyalgia
Caron, C. (2022, July 29). Feeling dismissed? How to spot “medical gaslighting” and what to do about it. The New York Times. https://www.nytimes.com/2022/07/29/well/mind/medical-gaslighting.html
CFS Unravelled. (2019, February 13). Fibromyalgia symptoms: Not just pain–shocking list will surprise. YouTube. https://www.youtube.com/watch?v=ihEgDT084fM&t=490s
Kloss, K. (2023, June 2). How to tell if your doctor is gaslighting you. CreakyJoints. https://creakyjoints.org/living-with-arthritis/mental-health/how-to-tell-if-your-doctor-is-gaslighting-you/
Laderer, A., & Caplan, A. (2022, November 29). 7 tell-tale red flags of medical gaslighting and how it can lead to a horrifying misdiagnosis. Insider. https://www.insider.com/guides/health/mental-health/medical-gaslighting
Liptan, G., & Chadwick, A. (2023, February 9). Fibromyalgia treatment: What to expect in 2023 | Dr. Ginevra Liptan & dr. Andrea Chadwick. YouTube. https://www.youtube.com/watch?v=1B72gTMg7ME Raposo, J. (2022, June 23). What is spoon theory used for, and what are its benefits? GoodRx. https://www.goodrx.com/health-topic/mental-health/spoon-theory